Documenti di Didattica
Documenti di Professioni
Documenti di Cultura
THE CONTEMPORARY
WORLD
A Compendium
25 24 23 22 21 20 19 18 17 16
10 9 8 7 6 5 4 3 2 1
Acknowledgments • xiii
Vaibhav Saria
Sylvain Perdigon
Julie Livingston
10. Living and Dying in Mental Health: Guns, Race, and the History of
Schizophrenic Violence 205 •
Jonathan M. Metzl
Shao Jing
15. Just Living: Law, Life, Livelihood, and Sexual Assault • 289
Sameena Mulla
16. “If You Remember, You Can’t Live”: Trauma, Insecurity, and
the F/utility of “PTSD” in Haiti 301 •
18. Thinking about the Secular Body, Pain, and Liberal Politics • 337
Talal Asad
A. David Napier
Christopher Dole
21. The Good and the Bad Breast: Cosmetic Surgery and
Breast Cancer 382 •
Bernadette Wegenstein
22. Attachments of Life: Intimacy, Genital Injury, and the Flesh of the
U.S. Soldier Body 399 •
Zoë H. Wool
Aslıhan Sanal
26. Never Quite Given: Calling into Question the Relation between
Person and World in Postinvastion Iraq 463 •
Hayder Al-Mohammad
Clara Han
29. Walking Through: Movement, Schizophrenia, and the Vicissitudes
of Presence 510 •
Sarah Pinto
32. “God Isn’t Finished with This City Yet”: Disputing Katrina-Related
Deaths in Postdisaster New Orleans 559 •
Anne M. Lovell
Roma Chatterji
Contributors • 823
Index • 829
ACKNOWLEDGMENTS
There have been many friends and colleagues who have helped bring this project
to fruition. We are grateful to Reed Malcolm, who, on behalf of the University of Califor-
nia Press, invited us to edit a medical anthropology handbook suitable for upper-
level undergraduates and graduate students. He allowed this book to take unconven-
tional paths as it took on a life of its own. We are so very grateful for his openness to
the project.
Our contributors cannot be thanked enough for the richness of their engagement. We
thank the following authors and holders of copyright for permission to reproduce previ-
ously published pieces in revised form: Talal Asad, “Thinking about the Secular Body,
Pain, and Liberal Politics,” Cultural Anthropology 26 (4): 657–75, November 2011; Harry
Marks, “Chemonotes,” Social History of Medicine 25 (2): 520–39, 2012; David Napier,
“Nonself Help: How Immunology Might Help Reframe the Enlightenment,” Cultural
Anthropology 27 (1): 122–37, February 2012; Adriana Petryna, “The Right of Recovery,”
Current Anthropology (based on the Wenner-Gren Symposium, The Anthropology of
Potentiality), 2013, 54(S7): S67–S76; Lisa Stevenson, chapter 5 of Life Beside Itself: Imag-
ining Care in the Canadian Artic (Berkeley: University of California Press, 2014).
Raqs Media Collective created a beautiful new artwork to be placed on this book’s
front cover, a work that can be taken as a chapter in its own right. Thank you, Raqs, for
your generous and brilliant participation in this project.
We would also like to express our gratitude to our colleagues in the Department of
Anthropology, our colleagues in the Critical Global Health Seminar, and especially to our
xiii
graduate students at Johns Hopkins University, whose conversations in seminars, over
coffee, and on Skype have contributed so much to our thoughts here.
Our enormous thanks to Amy Krauss, Andrew Brandel, Grégoire Hervouet-Zeiber,
and Mariam Banahi, who helped this volume come together for submission. And we
thank Maarten Ottens, who graciously made time to give assistance with the illustrations
and designed the front cover.
This book is dedicated to our late colleague and friend Harry Marks, whose curiosity,
generosity, and wondrous depth of knowledge continually inspire us.
xi v • ACKNOWLEDGMENTS
INTRODUCTION
A Concept Note
1
we claim to provide empirical evidence for the abstract theorization of philosophers:
rather, we hope to trace the multiple paths that we want to keep open for anthropological
explorations in the investigation of life and how it is conjoined to death in specific, con-
crete ways.
Recent attempts in the anthropology of medicine (or medical anthropology), as well
as science and technology studies, have made impressive gains in understanding how
the emergence of the biopolitical state, neoliberal restructuring of markets, globalization,
and advances in biology have shifted the emphasis from society as an object of study and
reform to life as an object of study and reform. Yet, narrowing down the notion of life to
biological life alone has drawn a boundary between more classical questions about life,
including those from within an anthropology of religion on the impulse to regeneration
within the rituals of death and of sacrifice (see Bloch and Parry 1982; Puett 2004) and
the so-called new questions that assume that unless the prefix bio- can be added to a
concept, that concept becomes irrelevant to our contemporary conditions. Might we repo-
sition anthropology to ask such questions as: What description would be adequate to our
sense of life and even reality as precarious or fragile? What is it for a human being to be
awakened to his or her existence? What is it for humans to have a life in language? What
is the relation between cultural differences expressed in notions of context, milieu, and
disposition that bind us to our culture and the impulse toward criticism, skepticism, or
denial of the connections that might create positive energies toward reform or secrete
destructive impulses that drain life out of our relations, making them ghostly or spectral?
How do attachment and detachment, trust and skepticism, between those who are close
or distant, or between the human and the inhuman, play out at different thresholds of
life? Do the critique of humanitarianism and the taken-for-granted assumptions about
the human that privilege sentimental connections exhaust the possibilities of the anthro-
pological impulse to respond to suffering? How can we rethink notions of the ideal, the
normal, and the pathological?
It is not our claim that such questions are completely absent from the recent magiste-
rial anthologies in medical anthropology. Yet we may ask how the very impulse to put
these texts within the subdiscipline of medical anthropology or of science and technology
studies tends to create the idea of these subdisciplines as fully constituted domains of
inquiry, which then try to establish relations with other such subdisciplines as anthropol-
ogy of religion and linguistic anthropology (e.g., Briggs 2004). We are curious as to how
the notion of life and what is asked in relation to living and dying may be subtly shaped
by assuming these boundaries. Why are “ethics” and “politics” marked out as domains
separate from each other and from everyday life, for instance? What if these boundaries
were not there in the first place?1 Is the impulse to carve a different domain for medical
anthropology also a way of acknowledging the dominance of public health and medicine?
The rest of this introduction is organized as follows: We first take issue with recent
work that has privileged the power of biology to generate “newness” in contemporary
social life. The mystery, we suggest, is how newness comes to be embedded in older
INTRODUCTION • 3
intensities and the waxing and waning of force through which life is reconstituted, on
the other hand, offers a possibility that something new might emerge to sustain life
(Singh 2014). We thus suggest, as the chapters in this book beautifully demonstrate, that
embracing an idea of life and death that goes beyond the notions of the biological (even
while including it) may help anthropology be genuinely open to pathways for reimagin-
ing human life as the mutual absorption of the natural and the social and the fragility
with which they come to be aligned.
In a series of essays, Didier Fassin (2009; 2014) proposed the term politics of life in order
to highlight the elusiveness of life in Michel Foucault’s work on biopolitics and to draw
attention to what politics concretely does to life in terms of the simultaneous assertion
of the sacredness of life as an abstract concept and the differential valuation of concrete
lives in the actual institutional practices of modernity. Through an acute analysis, Fassin
takes issue with a widely held view that Foucault’s concept of biopower and his subsequent
work on biopolitics take as their object “life itself.” As is well known, Foucault elaborated
biopolitics through a detailed description of how population emerged as a biological real-
ity independent of individual lives through the application of statistical reasoning in
eighteenth- and nineteenth-century France (Foucault [1975–76] 2003; [1977–78] 2007).
As a technology of power distinct from mechanisms of discipline, which sought the
individual’s conformity to the norm, biopolitics was the “control of life and the biological
processes of man-as-species and of ensuring that they are not disciplined, but
regularized”—a regulation made possible through “statistics, forecasts, and overall meas-
ures” (Foucault [1975–76] 2003).
Foucault’s analysis of the regulation of the population, or the efforts to intervene in
the vital characteristics of “man-as-species,” spurred a whole gamut of terms in anthro-
pology that took bio- as a qualifier: biosociality, biological citizenship, biocapital, and
bioavailability, to name a few. Yet, as Fassin points out, those working within the tradition
of Foucault have tended to take the notion of life as that which is defined by biological
knowledge alone. We may here note a curious divide in anthropology between an impulse
to see life as an object of intervention and a biological reality that is regularized through
deliberate actions grounded in biological knowledge and statistics on the one hand, and
an impulse to see life as a complex entanglement of norms, customs, and practices that
escape this regularization on the other. While we are in agreement with the idea that the
social is not the ground of all being, as well as with the need to question the givenness
of biology as that which underwrites societal variation, the questions that arise from the
dual notion that life needs forms but that forms are not pure human constructions are
so difficult that most discussions fall into the known divisions between the given and
constructed or the conventional and the natural. Even such issues as those of finding
adequate ways of describing the entanglement of the natural and the social need more
INTRODUCTION • 5
Technologies of security seek to transform those regularities into those considered more
“favorable”—what Foucault calls “normalization.” Consider variolation for smallpox.
Through artificially inoculated disease, future cases can be prevented, thus allowing for
“the progressive self-cancellation of phenomena by the phenomena themselves” (66).
Government of the population, then, involves the deployment of “reflected procedures”—
calculations of risk and identifications of dangers, but also the fears, prejudices, and
opinions of a public, which can be got hold of through campaigns and education. Yet we
may ask: How are these internal dangers discerned? Does normalization necessarily fol-
low such discernment, and if so, in relation to whom, and in what registers of social life?
Do technologies of security necessarily entail deliberate action on the basis of categories
that are settled in advance?
In her classic work on race, sexuality, and empire, Anne Stoler both extends and
shows the limits of Foucault’s concept of biopower, in that it was constructed primarily
with regard to a history of European sexuality and to state racism within the boundaries
of a Europe largely extricated from its embeddedness in empire (Stoler 1995). Of par-
ticular interest to us is her finely tuned discussion of how internal dangers to European
society came to be constituted through the entanglement with colonial settlement.
Instead of relying on a picture of colonialism as simply the exportation of secure
ideas of European supremacy and the bourgeois self, Stoler demonstrates how a
pervasive anxiety over the security of the European population was expressed not only
in relation to a clearly demarcated other, but perhaps more so in relation to mixed-
blood children and destitute white colonial settlers who would be legally identified
as European but threatening to European identity as such. That is, European identity
came to be forged through threats that were dubiously internal. Stoler argues that in
colonial orders, “the concept of a ‘population’ did not substitute for a ‘people’: both con-
ceptions represent state-building and nation-building projects in which a racial grammar
tying certain physical attributes to specific hidden dispositions played a crucial role”
(1995, 39).
Thus, extending Foucault’s concern not “with modern racism’s break with earlier
forms, but the discursive bricolage whereby an older discourse of race is ‘recovered, modi-
fied, encased and encrusted’ in new form” (Stoler 1995, 61), Stoler examines the ways in
which vulnerabilities of the bourgeois colonial project were given expression and shored
up, particularly in the domain of sexuality and the domestic: “management and knowl-
edge of home environments, childrearing practices, and sexual arrangements of Euro-
pean colonials were based on the notion that the domestic domain harbored potential
threats both to the ‘defense of society’ and to the future ‘security’ of the [European]
population and the [colonial] state” (96). The harried efforts in discerning these vulner-
abilities demonstrate the instability and flux of who or what was to be defended: defense
was forged through responses to anxieties over securing whiteness and bourgeois
respectability, yet their nature, too, was being forged. These anxieties found a potent
locus in the presumed vulnerability of children’s sexuality, which could be deformed
INTRODUCTION • 7
European medicine; rather, it arose both from the reluctance to foot the bill for medical
provision for the rural poor and from fear that interference with pilgrimages would
threaten the legitimacy of colonial rule by infringing on its promise of “religious toler-
ance.” Thus the colonial government pursued what Arnold calls a “noninterventionist
laissez-faire policy toward cholera” that took cholera not as an urgent issue but as a long-
established disease, to be handled in the form of piecemeal intervention and rather com-
placently, except with regard to specific bodies (195). Even as the cholera vaccine became
an available technology of prevention, its use was primarily confined to soldiers, prison-
ers, and tea-estate workers: those who secured the territory and the existence of the colo-
nial state militarily and commercially, or those who were incarcerated in a site of medical
observation and control that was deemed accessible to colonial power and knowledge (see
also Misra 2000). Here we see that what is at stake for the colonial government is not only
the securing of the biological existence of the European population but also the life of a
political entity—stakes that can come into contradiction (see Asad 2013). The abstract
nature of biolegitimacy finds its concrete specificity in such contradictions.
We have suggested throughout this discussion that, rather than consider the qualifier
of bio- as that which allows for a clean break from older forms of sociality and of politics,
as some recent work on security threats and bioterrorism would suggest (see Lakoff and
Collier 2008), we can query the ways in which biosecurity, biopolitics, and biolegitimacy
are embedded in these older forms and may be transformed by them or transforming of
them. Further, an attunement to the senses of vulnerability and fragility suffusing the
state can illuminate the contradictory ways in which projects of biosecurity and biopoli-
tics are tied together.5 Keeping in view the ways in which newness is embedded in older
forms complicates an evolutionary or linearly accretive view of citizenship that scholar-
ship that privileges the power of biology to generate newness in social life tends to rely
on. Nikolas Rose, for instance, finds it “useful” to “think of a kind of evolution of citizen-
ship since the eighteenth century in Europe, North America, and Australia: the civil
rights granted in the eighteenth century necessitated the extension of political citizen-
ship in the nineteenth century and of social citizenship in the twentieth century” as the
starting point for his discussion of biological citizenship (Rose and Novas 2005, 440). In
this view, citizenship projects move along an evolutionary line from the rights of man,
which finds their origins in natural law, to the emergence of the liberal state, which
guarantees the rights of those bound to a nation-state through law that humans them-
selves author. This national citizenship, Rose argues, is today challenged by citizenship
claims on the basis of “bare life” in the form of human rights claims and by what he calls
“biological citizenship”: claims to citizenship on the basis of biological knowledge in the
form of genomics. Rose posits that this citizenship is both individual and collectivizing.
Individuals come to have a relationship to themselves in terms of their biology—the
knowledge of risks of disease and capacity for health inscribed in their genomes. And
this knowledge gives rise to “new forms of ‘biosociality’ ” in which collectivities are cre-
ated around “a biological conception of shared identity” (442).
INTRODUCTION • 9
habit that became a durable mode of being and situated him as a listener within a “dif-
ferent hearing reality” (149). He remarks, “Indeed, when I lost my capacity to eavesdrop
[due to his deafness] it wasn’t a ‘point of view’ on or a representation of reality that I lost
but a whole reality that I had been inhabiting and that was no longer available for me to
inhabit” (150). Yet after Hage received a cochlear implant, he began to “yearn every now
and then for the world of deafness, which was not as dominated by symbolic or symbol-
izable dimensions. . . . It is not a world without words, but rather even words themselves,
as they lose this sharp differentiation, start conveying less symbolic meaning and more
an emotional charge” (154).
What Hage brilliantly renders here is how deafness—a biological condition—becomes
a part of one’s being, one’s disposition. We can expand these thoughts to the contentious
debates over cochlear implant technology within the Deaf community and between Deaf
activists, hearing parents, and medical professionals. Whereas medical professionals and
hearing parents have applauded cochlear implant technology as an alternative to deaf-
ness, Deaf activists have argued that the cochlear implant casts deafness as a disability,
and moreover is a denial of Deaf culture (see Blume 1997; Blume 2010; Brusky 1995).
This denial, they argue, is acutely threatening because it not only denies the recognition
of actually existing members of Deaf culture but, even more, presents a threat to the
survival of Deaf culture by making hearing children out of deaf children. Cochlear
implant technology, however, has also provoked heated debates within the Deaf com-
munity, particularly between late-deafened adults and those born deaf, indicating that
the ties between identity and existence vary not only in relation to a biological condition,
but in how that biological condition emerges in a life.
This heterogeneity of experience shaped Deaf activism’s public criticism of this tech-
nology. Stuart Blume remarks that the British Deaf Association (BDA) made a public
position of “non-support” only after heated internal debate. Yet the language deployed in
their demonstration of nonsupport is illuminating: “The drive to ‘normalise’ Deaf peo-
ple, by increasing the quantity of sound which can be sensed, carries with it the danger of
alienating the Deaf person from their own self-identity, and from their own natural com-
munity and its living language, without allowing full integration and access to hearing
society” (BDA 1994, 25–26, quoted in Blume 1997, 49; emphasis ours). Note here how
deafness is expressed in terms of a “natural community” with a “living language.” This
“living language” involves sign language, but the stakes here are not just to make acces-
sible different options to learn (about) sign language. The idea of a natural community
with a living language points to the way in which we inhabit our life in language. Whereas
those who are blind would not consider themselves as inhabiting a “blind culture,” or at
least have not done so, those with deafness identify with a culture in which a notion of
the good life arises.7 As a Deaf activist remarks, “In the broadest sense, a human being,
hearing or deaf, is better off having rich, meaningful and satisfying dialogues with only
100 individuals than to have superficial, parrot like, and stifled dialogues with 10 million
individuals” (quoted in Brusky 1995, 255). Rich, meaningful, and satisfying dialogues
INTRODUCTION • 11
“high-functioning”—tend to uphold an idea of independence that those parents of children
with low-functioning autism or those with low-functioning autism themselves find dis-
cordant with the enormous efforts that go into care and into living.
Underlying the tensions over whether one has autism or is autistic—that is, how one
identifies with this biological condition—may be the delicate question of how depend-
ency is admitted into social and political life. Is the disability lived by low-functioning
autistics a social construction that can be addressed through social supports to allow for
“independent” living, or is there a genuine dependency that calls for acknowledgment
not only for the person with autism, but for his or her caregivers? Is lifelong dependency
compatible with a liberal conception of citizenship?
The feminist philosopher Eva Feder Kittay points out the difficulties that have arisen
for severely mentally retarded people in relation to the disability rights movement, which
she argues has “followed a blueprint developed by persons of color, women, and gays and
lesbians. All of these attempts by the marginalized to be recognized and fully enfran-
chised demand that the practice of liberalism be consistent with its tenets of universal
equality and freedom” (Kittay 2001, 559). Severe mental retardation, however, may be
“liberalism’s limit case”: “liberalism invokes a notion of political participation in which
one makes one’s voice heard. It depends on a conception of the person as independent,
rational, and capable of self-sufficiency. And it holds to a conception of society as an
association of such independent equals” (559). For the mentally retarded individual, to
be heard or recognized, to have her or his needs and wants responded to, requires “an
advocate” and entails a relationship between dependent and advocate that “falls outside
the conventional understandings of the relationship between equals within liberalism”
(562), while also revealing the mutual dependency that is constitutive to our lives as
humans. With dependency, care becomes central, both as a labor and in terms of its
texture: “how the care is bestowed makes all the difference between the potential for
harm and spirit-sustaining aid” (575).
Kittay’s discussion of care points to limitations in Rose’s model of “active” biological
citizenship discussed earlier. The demand for recognition for the severely mentally
retarded demonstrates that ideas of “self-care” in which the self is understood as the
independent, rational, and self-possessed actor who seeks to maximize his or her interest
may be a potent fiction of liberalism, which contributes to the failure to be open to other
ways of being and to the crucial place of care in making a world inhabitable. Acknowledg-
ing the demand for recognition may entail seeing the self in terms of relationships, such
that the responses to the concrete other reveal the human self.
In turning to AIDS activism, we see how existence and identity are tied to each other in
ways that contrast with both Deaf activism and the neurodiversity movement. AIDS activ-
ism in the United States found an anchor in the gay community and was folded into that
community’s forging of identity as it sought to challenge the linked stigmas of so-called
deviant sexuality and disease. Yet, we might say that HIV/AIDS is not a biological condi-
INTRODUCTION • 13
medical research and state regulatory norms work in tandem in the exploitation of the
individual’s search for cure and the appropriation of bodies as biological resources. Adri-
ana Petryna, in her study of the global clinical trials industry, argues that the conventions
of “good science” are mobilized in the rationale for seeking “treatment naive” popula-
tions outside of the United States and Western Europe for clinical trials, which rely on
the notion of informed consent in which subjects assume risks in their search for cure
(Petryna 2009). Elaborating what he calls “biocapital,” Kaushik Sunder Rajan argues that
structural violence underpins globalizing ethics in clinical trials. The violence of the
liberal contract is evidenced in its freeing of subjects to make their bodies available to
experimentation; in low-income sites, healthy subjects subject themselves to risk as a
means of economic survival (Sunder Rajan 2006).
Studying the clinical applications of human embryonic stem cell therapies in India,
Aditya Bharadwaj insightfully remarks that the case of “structurally violent clinical trials”
demonstrates how “the inherently violent nature of demarcated spaces . . . gets stabilized
as a global gold standard [of ] good manufacturing or good clinical practice” (Bharadwaj
2014, 97). Demarcated spaces of science, or what Bharadwaj calls “normal science,” are
those spaces restricted to a polity of interested professionals and demand specific ways
of performing, witnessing, and validating. Focusing on a maverick experimental site that
has gained a large patient base through the clinical application of experimental stem cell
therapies, Bharadwaj shows how a sense of norm violation underlies its global reception
as a “dangerous experiment.” The scientific director of this clinic, for instance, has not
moved through the “obligatory passage points” of demonstrating efficacy in animal mod-
els and validation of one’s findings in the form of publications, which are the modality
of witnessing for the scientific polity. As such, “[t]he agency of spinal cord patients tra-
versing the globe in the search of recovery and their narratives of healing are rejected as
mere placebo or desperation as opposed to credible data” (97). Bharadwaj’s analysis
reveals limitations to straightforward narratives of innocent victimhood or willful,
informed decision making, which seem to fall along taken-for-granted ideas of a North–
South divide and of an unregulated Third World that the First World exploits. Instead,
focusing on individuals’ search for therapeutic possibilities may cast the conditions for
scientific knowledge and care in an entirely different light: “their frail and failing bodies,
having reached the definite limits of therapeutic possibilities embedded in biomedicine,
compel projects of experimental self-formation around the globe. For these protagonists,
therapeutic options at ‘home’ come with a caveat: demands for care can be honoured only
so long as these can be normalized within disciplinary confines of state, science, and
clinic” (104).
The search for cure and the limits of therapeutic security associated with citizenship
that it reveals bring us back to Fassin’s insights with which we started this section: that
in engaging life, there is more at stake than the regulation of populations and the deliber-
ate actions of the state to create regularities. The challenge is to see how the biological
and the social come to be absorbed into each other in concrete, specific ways. Fassin
VA R I AT I O N A N D M I L I E U
We respond to these questions by first turning to the ways in which anthropology has
approached the entanglement of the biological and the social. One concept that has been
particularly powerful is that of local biologies, which Margaret Lock developed in order to
acknowledge the significance of the biological and to challenge a presumed biological
universality of the human body that biomedicine was seen to uphold (Lock 1993; Lock
2013). In her comparative study of aging and menopause in Japan and the United States,
Lock raises the question of whether different symptoms are indicative of having been
socialized into representing the same disease differently or whether these symptoms are
expressive of a different biology. Indeed, she argues, the norms of gender and sexuality
were part of how the body itself was experienced; they were not only representations of
the body (Lock 1993).
More recently, Lock and Vinh-Kim Nguyen extended the idea of local biologies
through elaborating the notion of “biosocial differentiation,” which they define as “the
continual interactions of biological and social processes across time and space that even-
tually sediment into local biologies” (Lock and Nguyen 2010, 90). “Local biologies” are
here understood as “snapshots” of both evolutionary time and the longue durée of his-
torical change: “Understanding the body as contextually situated means that we attribute
variations in biology to regularities produced by temporal processes rather than to statis-
tical laws.”
It may be helpful at this point to consider the emphasis on contextualization in both
the earlier and recent work of Lock more closely. Although the scholarship on local
biologies has certainly gone a long way in unsettling any idea of a universal biology, we
find it striking how context arises as, for the most part, a taken-for-granted entity through
which the material body gains its particularity. In the commitment to illustrating the
“context-dependence” of biology as defined against an abstract universal body, however,
far less attention is paid to the problem of individuality, or variation as an aspect of the
living being (see, for instance, Brotherton and Nguyen 2013; Hamdy 2013).8 Although
Lock and Nguyen acknowledge that “humans are unique with respect to both their
genomes and their lived experience and in this respect embodiment is personal,” the case
studies they offer—on the neurological disease kuru, health disparities in birthweight
INTRODUCTION • 15
and preterm birth, and the transformation of microbes by human activity—are attempts
to discern what the authors call “regularities” that distinguish groups or “patterned vari-
ation in subjective bodily experience” based on the assumption that “inevitably certain
experiences are relatively similar across groups of people living in shared environments”
(2010, 91). If we take the problem of individuality—or variation—instead as a starting
point for the mutual inflection of biological and social norms, “context” begins to appear
in a different light.
We take as our guiding inspiration here Georges Canguilhem’s repeated attention to
the problem of individuality as a problem of the relation of the organism with the milieu.9
As is well known, in The Normal and the Pathological Canguilhem challenged a pervasive
view in medicine, biology, and physiology that conceived of the normal and the patho-
logical as a matter of quantitative difference (Canguilhem 1991). Instead, the concepts of
the normal and the pathological, he argued, must be interpreted as vital values: for it is
the organism as a whole that experiences disease. Take the presence of sugar in the
urine, known as glycosuria—a classic symptom of diabetes. As Canguilhem argues, in
seeing glycosuria in terms of physico-chemical laws—as a problem of colloidal equi-
libria—we fail to see the vital quality of glycosuria. A quantitative difference matters
insofar as it takes on a vital value for the living being, be it the patient or the physician.
It is the experience of the sick man that is generative of biological knowledge through
therapeutics, or the search for cure. To put it on an even more quotidian level, we might
recall Wittgenstein’s wonderful example in which he says that as I sympathize with
a man who has pain in his hand, I do not look at the hand but look at the face or in
his eyes—for I take it for granted that it is not the hand that suffers but the person who
suffers.
This attention to the concrete living being in its specificity forms the basis for Can-
guilhem’s elaboration of the concept of normativity. Drawing on Kurt Goldstein’s clinical
observations of men with head wounds during the 1914–18 war, he remarks,
What Goldstein pointed out in his patients is the establishment of new norms of life by a
reduction in their level of activity as related to a new but narrowed environment. The nar-
rowing of the environment in patients with cerebral lesions corresponds to their impotence
in responding to the demands of the normal, that is, the previous environment. . . . The
patient is sick because he can admit of only one norm . . . the sick man is not abnormal
because of the absence of the norm but because of his incapacity to be normative. . . . The
content of the pathological cannot be deduced, save for a difference in format, from the
content of health; disease is not a variation on the dimension of health; it is a new dimen-
sion of life.” (1991, 186)
Health, on the other hand, cannot be simply equated with normal, as the pathological
is “one kind of normal” and being healthy is “not only normal in a given situation, but
being normative in this and in other eventual situations” (Canguilhem 1991, 196).
INTRODUCTION • 17
concrete a priori of medical experience that death could detach itself from counter-nature
and become embodied in the living bodies of individuals” (195). Human finitude thus
authorizes a scientific discourse in which individuality is to appear in “the objectivity that
manifests and conceals it, that denies it and yet forms its basis” (198). Foucault’s pre-
occupation here is with the positive knowledge that defines disease to stabilize health.
Clinical norms emerge on the basis of the knowledge of individual bodies and their
variations, but medicine’s knowledge of “the individual” cannot be confused with the
problem of individuality for the living being.
We suggest here that Canguilhem explores the problem of individuality precisely as
a problem: not that which is settled, but that which is precarious and thus achieved
through enormous effort. We can appreciate this precariousness in his essay “Is a Peda-
gogy of Healing Possible?” in Writings on Medicine (Canguilhem 2012). Here, Canguil-
hem explores how healing is placed awkwardly in and beyond the doctor–patient relation-
ship. Whereas cure in medicine is defined externally through conventionally accepted
knowledge for the purpose of treating the patient, healing “is experienced and avowed by
the patient” (58). The patient’s experience with disease and the hope to recover a lost
health introduces into medicine an experience that is not at all transparent. A patient who
might be cured of infection might continue to insist on feeling unwell, while a patient
might also become ill through being cured, by perceiving around himself or herself a
“residual noxiousness” or an anxiety in the patient’s circle that lingers around an unfor-
giving disease. As such, “health and healing arise from a genre of discourse other than
the one whose vocabulary and syntax we learn in medical treatises and clinical lectures”
(59). Vital norms can be mismatched with clinical norms, a reality that the physician has
difficulty considering precisely because the mismatch reveals the limits of his efficacy.
Canguilhem thus rejects responses within medical education that would seek to trans-
form this experience into a matter that can be adequately addressed through textbooks:
“Should one introduce into university-hospital education of future doctors instruction in
‘convivial’ participation and thus tests and exams in aptitude for human contact? . . .
Human contact is neither taught nor learned in the same way as the physiology of the
autonomic nervous system” (64–65). To learn to heal, then, moves beyond medical
knowledge proper to acknowledge that healing is not a return to a previous state, but
rather a new state that is marked by the experience of disease.11
We now come to the question, Does an attention to the problem of individuality help
us see “context” in a different light? Up to this point in our discussion, we have seen how
vital norms are internal to the living being but would not have significance independent
of the milieu. We have considered how the sick person experiences his or her milieu as
a new milieu, one that is “narrowed” or shrunk, while a healthy person is able not only
to stabilize the relationship to the milieu but also to transcend it by positing new norms.
In this sense, we can suggest that the singularity of the living being and the milieu, while
semiautonomous from each other, are woven together and being woven simultaneously.
There is no fixed milieu as much as there is no taken-for-granted individual.
INTRODUCTION • 19
extend beyond individuals directly affected by trauma, and incorporate recognition of
neo-Lamarckian marks of human atrocities and abuse.” Such neo-Lamarckian marks
consist of the “intergenerational transmission of biological changes brought about by
traumatic effects” (304).
We might compare this perspective with the mechanistic view implicated in French
neo-Lamarckism, which Canguilhem characterizes in the following way: “When the
French neo-Lamarckians borrow from Lamarck, if not the term milieu in the singular
and its absolute sense, then at least the idea they have of it, they retained of the morpho-
logical characteristics and functions of the living only their formation by exterior condition-
ing—only, so to speak, their formation by deformation” (Canguilhem 2008, 103; empha-
sis added). For Canguilhem, what is essential to Lamarck’s ideas is that the organism’s
adaptation to, in Lamarck’s view, a largely indifferent milieu crucially depended on the
initiative of the organism’s needs, efforts, and continual reactions: “The milieu provokes
the organism to orient its becoming by itself. Biological response far exceeds physical
stimulation” (115).
With Canguilhem, we come to see the milieu from the vantage point of the singular
living being, in which the place of perception is crucial: “The milieu proper to man is the
world of his perception—in other words, the field of his pragmatic experience in which
his actions, oriented and regulated by the values immanent to his tendencies, pick out
quality-bearing objects and situate them in relation to each other and him” (118). The
milieu is centered on the living being, whose precarious responses to need, to disease,
to health lost, and to healing reveal its singularity.
But, just as Canguilhem helps us see the problem of individuality for the living being,
thus helping us see how the shift from anomaly to disease cannot be known in advance,
we may ask of Canguilhem if the human voice and the scale and range of the human
body, too, cannot be known in advance. For we might query how Canguilhem’s commit-
ment to retrieving the vital from mechanism may lead him to take the human as a some-
what stable entity, clearly differentiated from other organisms through the customs,
social organization, and technologies that define the existence of “man” as a living being.
Whereas Canguilhem helps us attune to the variation internal to the living being as it is
tied to a dynamic milieu, thus illuminating the mutual inflection of biological and social
norms in man, there is far less attention paid to the tenuousness with which social
norms, customs, and practices are aligned with man’s sense as a living being. How might
we attend to the fragility of life, in the sense of a human form of life?
F O R M S O F L I F E : A W I T T G E N S T E I N I A N P R O V O C AT I O N
The network of concepts that have emerged so far—the relation between the natural and
the social; the mobility of the normal and the pathological in both individual and collec-
tive life; the variability across social formations as well as that which is internal to the life
of the individual; and how death is absorbed within life—all these issues point to concerns
INTRODUCTION • 21
internal part of the operations in the battlefield, whereas it might be a sign of a strange
relationship if it were to occur within a matrimonial relationship.
The paragraph before the one cited above had already laid out beautifully the way
Wittgenstein thinks of language as always incomplete—growing new dimensions within
as a form of life grows or changes: “If you want to say that this shows them [some lan-
guages] to be incomplete, ask yourself whether our language is complete;—whether it
was so before the symbolism of chemistry and the notation of the infinitesimal calculus
were incorporated in it; for these are, so to speak, suburbs of our language” (PI para. 18).
The picture of language as a city of words in which there are old and new streets, mazes
of streets and squares, houses with additions from different periods, as well as new bor-
oughs with straight streets and uniform houses is compelling for the idea that the form
of life in which language is housed is heterogeneous with many layers of time; newness
here is incorporated but retains the signs of its friction with previously existing forms.
Consider now paragraph 23, where Wittgenstein states, “Here the term ‘language-
game’ is meant to bring into prominence the fact that the speaking of language is part of
an activity, or of a form of life.” He then goes on to give examples that are varied and
include such acts as giving orders and obeying them, forming and testing a hypothesis,
doing an addition, asking, thanking, cursing, greeting, and praying.
We take from this paragraph the idea that what Wittgenstein is emphasizing is that
forming and testing a hypothesis or solving a sum in arithmetic on the one hand, and
praying or greeting on the other, are all actions that spring from our form of life. It is not
that the former activities are undertaken in response to objective requirements of science
(as the references to the suburbs in the city of words as including notations in chemistry
in the previous citation also attest) and the latter activities are indicative of cultural forms
that are shared. Rather, both kinds of activities—those we might think of ordinarily as
logical operations independent of culture and those we might think of as cultural activi-
ties par excellence, such as praying—are grown within a form of life. Thus, for instance,
the fact that when we perform an addition in arithmetic we do not assume that the sum
of the number will change according to the time of the day is something we naturally
assume from within our form of life; it is what makes it possible to correct someone who
gets the number wrong but not to come to blows over whether the sum changes when
the clock strikes twelve.
Now consider paragraph 241. It marks the third time that the expression “form of life”
occurs in PI, and here Wittgenstein says: “ ‘So you are saying [here is the voice of accusa-
tion] that human agreement decides what is true and what is false?’—It is what human
beings say that is true and false; and they agree in the language that they use. This is not
agreement in opinions but in form of life.”
Since the preceding paragraph, 240, had shown a scene in which mathematicians do
not come to blows over the question of whether a rule was obeyed (they may write scien-
tific papers about it), Wittgenstein suggests that to have an agreement in a form of life is
what allows disputes to take one form rather than another; so our idea of form of life is
INTRODUCTION • 23
evidence of the conservative character of Wittgenstein’s writing; we shall argue that this
passage (and others) point to a unique understanding of convention as forming a bedrock
beyond which there is no appeal; or, as the famous example of the spade states, “[M]y spade
is turned” (PI, para. 217). Yet Wittgenstein is also insistent that it is philosophical grammar
(Stanley Cavell calls this “criteria”) that tells us what an object in our world is: yet grammar
for Wittgenstein is completely arbitrary: “Grammar is not accountable to any reality. It is
grammatical rules that determine meaning (constitute it) and so they themselves are not
answerable to any meaning and to that extent are arbitrary” (Philosophical Grammar [1974],
para. 184). This mutual implication of the conventional and the natural, the given and the
arbitrary, blocks any temptation for a quick answer on the side of either mere convention
or complete determination for defining what a form of life is, and it constitutes one of the
richest archives one could imagine for thinking of our lives as humans.
There is some debate in the literature as to whether a form of life corresponds com-
pletely to the boundaries of a given community—hence Wittgenstein is evoking an eth-
nological sense of a shared culture of habits and dispositions, rules and customs—or
whether the expression refers to a single human form of life. But the issue as we see it
is not an either-or kind of issue. We can follow a lead from Cavell’s remarkable analysis
of the two separate dimensions of the expressions “form” and “life”—or the horizontal
dimension of forms and the vertical dimension of life—the former corresponding to
different societal arrangements and the latter to the idea of how life might be defined as
a human form of life.
It is helpful here to pay attention to the examples Cavell gives of the horizontal or
ethnological sense of form and the vertical dimension of life. In the former case we might
think of the difference between, say, coronation and inauguration, or different societal
arrangements for the devolution of property. In the latter case the differences alluded to
are those of being human or being animal or being bird—thus eating, pawing, or peck-
ing, each act meeting a biological need but only in ways that humans or animals or birds
do. Das (1998, 2007) has elaborated further that what language expresses here is the idea
of a naturalness of the act of eating, pawing, or pecking as belonging to our lives as
humans, as distinct from what is natural for animals or birds. It was this sense of the
naturalness of what the human form of life implied that was broken in the terrible vio-
lence of the Partition of India that Das (2007) studied. She showed that women’s bodies
were not only broken but claimed as if they were just property—surfaces to write male
enmities on. Thus the parodying of the social contract by its sexualization did not simply
rupture the fabric of the social but questioned the very idea that one had a human form
of life. Thus instead of finding criteria by which we could determine what constituted the
boundaries of a form of life or determining whether the expression “form of life” refers
to the sociocultural differences or to the form human existence takes, we might, follow-
ing Cavell and Das, think of these two aspects as nestling into each other, the social and
the natural mutually absorbing each other.
In a justly famous paragraph, Cavell says,
The agreement that Cavell then points out redefines our understanding of how lan-
guage and the world are not external to each other but have an internal relation. Thus the
issue is not whether we understand the meaning of words but whether we understand each
other about when an utterance is a rebuke or an assertion or a joke. This agreement does
not arise from the fact that we share the meanings of the words we use but rather arises
because in learning a language we learn a form of life and hence can project words into the
future with some assurance that they will be received in a spirit of our wanting to be under-
stood by each other, for if our words cannot be received, they cannot be understood, either.
Here is a remarkable formulation on the physiognomy of words in Remarks on the
Philosophy of Psychology (vol. 1), where Wittgenstein says: “The familiar face of a word;
the feeling that a word is as it were a picture of its meaning; that it has, as it were, taken
its meaning up into itself—it’s possible for there to be a language to which all that
is alien. And how is that expressed among us? By the way we choose and value words”
(p. 3e, para. 6).
Or the earlier “meaning is a physiognomy” (PI, para. 568).
It is worth pausing to take a deep breath here, for Wittgenstein is cautioning us about
any hurried conclusions about what is natural and what is mere convention. Is our feel-
ing of familiarity with how we use words arising from the facts of shared conventions an
arbitrary construct of culture? Or is this feeling something that evokes the idea of the
naturalness of certain ways of being in the world that are recognized in one’s culture but
that also allow us to project the idea of the humanity of an other who is embedded in a
different social group?
Let us see a remarkable formulation of this issue in PI (paras. 595, 596):
INTRODUCTION • 25
an impression of unfamiliarity upon us. If we find a boulder on the road we know it to be
a boulder but perhaps not for the one that has always lain there. We recognize a man as a
man but not perhaps as an acquaintance.
We want to flag two thoughts here: first, that our feelings of familiarity arise from
being within a form of life, so we accept certain actions—such as a way of speaking, or
recognizing emotion, or expecting the world to be like this and not like that. If something
appears to be strange, we know that we can find explanations, ways of reordering the
object we found strange, from within our way of life. Say, a boulder that has always lain
on a path I usually take is replaced by another boulder. I will have explanations that come
to me—perhaps, that someone is going to build something there. Or, if I expect to see
an acquaintance and find someone else, I know this person to be a man and not a tiger.
I do not have to work to compare this man with an existing picture of men I have in my
mind to recognize that this nonacquaintance is still a man. But now consider that some-
thing unfamiliar confronts me that is entirely outside my experience. I go to visit another
country and find that everybody there assumes that twice two is five. What would it mean
to say that though everyone believes twice two is five, it still is four. Wittgenstein says,
“Well I could imagine that people had a different calculus, or a technique we should not
call ‘calculating.’ But would it be wrong? (Is a coronation wrong?)” (PI, 226e–227e).
What is fascinating in this account in which we think of rightness and wrongness is that
these feelings seem to be grounded in something natural and something conventional. If
everyone believes twice two is five, we must also imagine that what they mean by calcula-
tion is not what we mean by it—in other words, the sense of rightness and wrongness
comes from feeling that this is not just a matter of “shared beliefs,” for other things that
elsewhere Wittgenstein calls “the apparatus of everyday life” must be different, too.
Finally, consider one of the last three passages in PI (para. 230e):
If the formation of concepts can be explained by facts of nature, should we not be interested,
not in grammar, but rather in that in nature, which is the basis of grammar?—Our interest
certainly includes the correspondence between concepts and very general facts of nature.
(Such facts as mostly do not strike us because of their generality.) But our interest does not
fall back upon these possible causes of the formation of concepts; we are not doing natural
science; nor yet natural history—since we can also invent fictitious natural history for our
purposes.
The ideas here are of rightness, fitness, of our expressions carrying greater natural weight
in such a way that we might come to feel that our language and world are in harmony
with each other. Laugier (2011) elaborates that the issue for Austin, Cavell, and Wittgen-
stein is not that of a correspondence between a statement and some fact in the external
world to which the statement refers; not even of correctness; but rather of the appropriate-
ness of a statement within the circumstances—the fact that it is proper. Thus how we
If the natural and the social thus mutually absorb each other, do they leave room for
recognition of the singularity of the individual? We saw earlier that Canguilhem saw the
individual as a site of novelty. Given his notion of disease as an experiment with life, he
was interested in variations internal to the individual. Recently, Caroline Humphrey
(2008) perceptively argued that “[c]ertain kinds of anthropological experience seem to
require the conceptualization of singular analytical subjects: individual actors who are
constituted as subjects in particular circumstances.” The circumstances she is alluding
to are “the advent of new regimes, convulsions wrought by war, schisms of former social
wholes, and, in general, the overturning of accepted patterns of intelligibility and the
advent of radical new ideas” (Humphrey 2008, 357).
One might think that there is some similarity in Canguilhem’s attention to the indi-
vidual precisely because disease or old age invites experimentation with norms, normal-
ity, and normativity, and with Humphrey’s attention to collective upheavals that leave
their traces in public archives through the work of individuals. Yet there are interesting
differences, since for Humphrey the individual becomes a subject through a decision
event, as in the example of the lives of specific individuals she discusses in the case of the
revolution and counterrevolution in Inner Mongolia in 1926–30. Here individuals appear
through their allegiance to or their betrayal of changing regimes and charismatic leaders.
But whereas for Canguilhem disease is a normal part of life, and the new norms with
which an individual experiments are embedded in his or her everyday, for Humphrey it
is in leaving the everyday that the individual becomes a subject.
The vision of singular individuals is strikingly different in scholars who take their
inspiration from Wittgenstein and Cavell. Laugier (2011) asserts that whereas for Witt-
genstein the central question was the common use of language, Cavell makes a new
question arise from that problematic—that of the relation between an individual speaker
INTRODUCTION • 27
and the linguistic community: “For Cavell, this leads to a reintroduction of the voice into
philosophy and to a redefinition of subjectivity in language precisely on the basis of the
relationship of the individual voice to the linguistic community: the relation of a voice to
voices” (Laugier 2011, 633). Thus for Cavell an abiding question is how one finds one’s
own voice in one’s history. Cavell repeatedly evokes Emerson’s essay on self-reliance to
show that finding this voice is a matter not of a dramatic decision that would mark a
before and an after but rather of learning how to align my voice with that of the others
within a form of life. Heidegger (1962), too, had argued that an identification with the
“we” that simply reproduces the common chatter does not allow an authentic (in the
sense of mine) self to appear, but he also recognized that even when the same words are
repeated as habit, when others repeat what I have said, my words get thickened through
such social usage; they acquire greater reality. For Cavell, too, the question of singularity
of the individual is not that of escaping the shared life in language but of being able to
confront one’s culture with one’s own imagination of one’s words and one’s life. This
could lead to the receiving of one’s voice as a gift from one’s culture; or, in the alternate
case in which my voice is stifled through institutional arrangements, it might take the
character of a rebuke. Cavell takes the former as demonstrated in the Hollywood comedy
of remarriage and the latter in the case of denial of the woman’s voice in the genre of
such films as Gaslight. The question is whether one’s culture is able to receive the indi-
viduality of the voice. Cavell grows this idea later by a profound analysis of perlocutionary
objectives contained in passionate statements and wants philosophy to remain open to
the order of law through a better understanding of expressions that carry illocutionary
force when convention and context are in place, and open to the disorder of desire
through perlocutionary force when expression must create a new context and carry the
uniqueness of the individual voice. There might be some resonances between Hum-
phrey’s contrast between “the situation” and “the event,” but for Cavell it is crucial that
we recognize the fragility of the real in both cases. The everyday is not overcome in the
process of individuation but appears as the natural expression through which desire
finds expression, as in the classic declaration of love in which it is imperative that the “I”
and the “you” are signaled out as unique rather than as representatives of institutional
power. As Cavell (2005) says, if in declaring my love for you I am counting on institu-
tional power (my wealth or patrimonial power) to ensure that you say yes, this fragile
situation becomes a way of stifling your voice rather than risking a rejection because my
desire is not answered. The risks to which statements with perlocutionary force are open
shows that everyday life harbors within itself the possibility that modes of subjectivation
might occur in circumstances that are most ordinary from the perspective of the collec-
tive and yet hold great risks for the individual, such as one finds in the vicissitudes of the
erotic event or in the disorders of desire.
The specific event, such as the experience of falling in love or falling into madness or
encountering violence, reveals one’s vulnerability not only to an external world but also
to the other with whom one inhabits the world. Even more terrifying is the thought that
From a Freudian point of view, the reality principle is presented as functioning in a way
that is essentially precarious. . . . No previous philosophy has gone so far in that direction.
It is not that reality is called into question; it is certainly not called into question in the way
that the idealists did so. Compared to Freud the idealists of the philosophical tradition are
small bear indeed, for in the last analysis they don’t seriously contest that famous reality,
they merely tame it. Idealism consists in affirming that we are the ones who gave shape to
reality, and that there is no point in looking any further. It is a comfortable position. Freud’s
position . . . is something very different. . . . Reality is precarious. And it is precisely to the
extent that access to it is precarious that the commandments which trace its path are so
tyrannical. (Lacan [1986] 1992, 30)
For both Lacan and Cavell the access to the real is precarious: the commandments do
not protect us from being besieged by skeptical doubts, and though both would agree
that we are the ones who give shape to our reality, this is only the beginning of the story
and not its end. The role that defenses play in Lacan might be compared with the
defenses we set up against the everyday in Cavell, which is why securing the everyday is
an achievement. We move to a related issue—that of understanding how the notion of
the limit becomes the point at which we can see the folding of the natural and the social
coming apart.
Let us consider briefly Wittgenstein’s “ethnological” examples, which are invariably of
imaginary tribes or otherwise hypothetical individuals and which give PI an eerie charac-
ter mirroring the trancelike character that everyday life sometime takes (see Das 1998).
Thus, consider the imagined tribe in which there is no grammatical expression for the
first person, or the imaginary tribe in which people act as if others have no soul or that
they cannot dissimulate. One kind of interpretation of these imaginary tribes veers toward
the idea that the function of conjuring these tribes whose interests and activities differ
from ours is not to help us see how these tribes are “other minded,” but rather
to illuminate aspects of our own forms of life. Thus Lear (1989; 2006) explicitly states
that the sketches of the imaginary tribes who are, say, “meaning blind” or who lack the
INTRODUCTION • 29
concept of a first-person perspective should not be seen as a genuine possibility or sites
for future fieldwork, but conceptual forms of thinking about our own lives. Does this
mean that for Wittgenstein no other form of life except our own is imaginable? We sug-
gest that what these examples show is precisely how the world might become lost to us
even as we live in it. Wittgenstein’s particular picture of this is that of our sense of the
natural way of doing things being put into question when words, as Wittgenstein says, are
drained of life. “We might say: in all cases, what one means by ‘thought’ is what is alive in
the sentence. That without which it is dead, a mere sequence of sounds or written shapes”
(Wittgenstein 1967, para. 143). But it is not only thought that is alive in a sentence but the
possibility of the projection of words, of their being received, or of the way that they might
be abandoned, becoming merely frozen slides, as the ethnographic examples from Das
(2007) about women who could only withdraw their words in the face of violence that
seemed to have destroyed the fabric not only of the social but also of the natural show.
This is one way of reading the chapters in which several authors of this book try to convey
what it is to lose one’s world. Healing, then, is not some kind of a return to the everyday
after all accounts have been settled, but being able to inhabit this very space of devastation
once again in a mode that Laugier (2013) and Han (2012) characterize as the stance of
care. There are no guarantees that our language can regain life; indeed, one could be
consigned to inhabiting the world as a spectral figure, a ghost. Yet the chapters show how
embracing an idea of life and of death that goes beyond the notions of the biological as
defined in science and technology studies will help anthropology to be genuinely open to
the pathways that still remain open for reimagining human life as expressing the social
and the natural in their mutual absorption as well as the fragility that comes from the
ever-present possibility that the fine alignment between these two modes will be lost. Does
a privileging of care as a mode of being in the world negate the search for social justice,
or somehow distract from the forms of cruelty that modern states and neoliberal markets
end up imposing on societies? The chapters in this book will show that the darkness of
our times is made palpable precisely in the mode in which we can see how large events
such as wars and occupations are nestled with the so-called small events, and that it is
their mutual braiding with each other that defines the texture of living.
If the idea of limits in Wittgenstein shows that we cannot know in advance the scale
and shape of the human body, the human voice, or the way forms of life might nurture
forms of dying, the concept of thresholds, which plays a vital role for Gilles Deleuze and
Félix Guattari, makes a shift toward tracing the varying intensities, and the waxing and
waning, of the forces through which life is reconstituted. Deleuze and Guattari (1980)
describe the self as the threshold, a becoming between two multiplicities that are them-
selves made of contingent assemblages between the biological and the social, points of
singularity in which several temporalities coalesce. Taking this idea into the anthropo-
logical register, Bhrigupati Singh argues that the concept can be animated ethnographi-
cally, demonstrating this through his attentiveness to varying intensities that relation-
ships take over a period of time (Singh 2014). Thus such affects as intense political
NOTES
INTRODUCTION • 31
3. However, see Michael Fischer, who has explored the ways in which technoscience and
massive social traumas can challenge our standing languages. Such challenges, he argues, are
experienced within social theory, which must pay detailed attention to the life that is forming
around us. For Fischer, anthropology must remain an open venture, dissatisfied with overarch-
ing theories and broad claims that are about the alienation of the technicization of life, or
globalization. See Fischer 2003 and 2007.
4. However, see Singh 2012 on the much older conceptions of the dual character of sov-
ereignty as punitive and protective in the Indo-European mythic imagination.
5. We question the recent fascination with and concern over bioterrorism and DIY biology
as generating the primary challenge to global health, ethics, and security as Bennett et al.
(2009) and Collier et al. (2004) suggest. For it is not at all clear that such concerns over bioter-
rorism are accorded the same privileged status for the political and ethical across the globe.
Moreover, bioterrorism or “terrorism” is stable only if a conventional geopolitics and politics
of emergency rooted in the United States is the taken-for-granted way of seeing the world,
such that deaths from “war” provoke a justification based on necessity, whereas terrorism
inspires horror and fascination. In his acute analysis, Talal Asad turns the mirror back on the
conventional discourse of terrorism and fascination with suicide bombing to ask what moral
assumptions are embedded in this discourse and what moral responses are assumed in this
distinction of “just war” and “terrorism” (Asad 2007).
6. We might compare our approach to Michael Walzer’s discussion of thick substantive
morality and minimal morality, the latter of which could be identified in responding only to
the most offensive injustices (Walzer 1994). Yet Walzer argues that minimalism can be iden-
tified in reiterated rules and principles across substantive thick moral cultures that reflect
different histories and different versions of the world. We, however, would take issue with the
idea of multiple versions of one world, and suggest that acknowledging the many-worlds
problem entails a genuine challenge for thought as the otherness cannot be tamed into rep-
resentational difference (see Das et al. 2014).
7. However, see the fascinating discussion between a blind philosopher and a sighted one
on whether statements on seeing convey experiential knowledge or only propositional knowl-
edge for the blind (Magee and Malligan 1995).
8. Duana Fullwiley’s work on localized biologies is perhaps one of the most significant
innovations on Lock’s concept. Fullwiley, however, is exploring biologists’ definition of bio-
logical difference in Senegal as made possible through the territorial boundaries of the nation-
state created under French colonialism (Fullwiley 2011).
9. The French philosopher Jean Gayon also sees the problem of individuality as a thread
running throughout Canguilhem’s work—as axiological, ontological, and in the relationship
of life and knowledge (Gayon 1998; see also Lecourt 1998).
10. It should be evident that our view of life as an analytical category is not derived from
the perspective of a vitalist philosophy, which would take life primarily in terms of living
organic matter. However, we find it helpful in this discussion of Canguilhem to note that
Canguilhem himself was drawn to vitalism—not in terms of defining a set of properties to
life, but rather as more a “method, or a commitment to an ethical system more than a theory,”
that keeps life and knowledge in an open relation. For a further discussion, please see the
chapter titled “Aspects of Vitalism” in Canguilhem’s Knowledge of Life and Paola Marrati and
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INTRODUCTION • 37
SECTION 1
NATALITY, SEXUALITY,
REPRODUCTION
. . .
N ATA L I T Y, S E X U A L I T Y, R E P R O D U C T I O N • 41
if the relation between institutional births and reduction of maternal mortality were an
established fact. It is, however, the changes in practices—the creation of a new cadre of
health workers and a conditional cash-transfer program, which become bundled with
other techniques such as those of meeting targets for sterilization operations and medi-
cal techniques for management of pain—that reconfigure the power dynamics of the
family. Kinship, technology, and the State intersect to create unique therapeutic strate-
gies, which might be measured on one dimension by the State and on completely other
dimensions by the users in terms of what constitutes the success or failure of an inter-
vention in public health. In a fascinating follow-up of this study, Veena Das observes in
a footnote that in the course of one year one can observe very interesting changes in
which even dais (traditional birth attendants) begin to incorporate the administration of
oxytocin injections not for management of emergencies but for normal births on the
grounds that without an injection infants do not “come out”; in other words, nature
begins to be imagined differently. We might recall here Wittgenstein’s remark on the
“invented natural history” that we discussed in the general introduction to this book.
Technology appears in a more recognizable form in the chapter titled “Conceiving
Life and Death,” in which Aditya Bharadwaj and Marcia C. Inhorn do a subtle reading of
the darker side of the so-called hope technologies, especially assisted conception and
stem cell technology. With devastating simplicity the authors state that while they are
seen as making, gestating, and supporting life, these technologies are also replete with
“little deaths.” The little deaths include destruction of elusive embryos created in IVF
labs or for stem cell generation, or the excess embryos that have to be terminated in
assisted conception so that the mother can safely carry the other embryos to term.
Remarkably, Bharadwaj and Inhorn are able to navigate the bitter politics that usually
pits conservative pro-life proponents against advocates for giving women full rights over
their bodies by sidestepping argument through principles and instead allowing experi-
ences of loss and premature endings to find expression. Instead of confining the discus-
sion of ethics to the authoritative and authorizing discourses of bioethics alone, they
draw on wider understandings of how loss and premature endings are braided with
notions of regeneration and sustenance from wider Hindu and Islamic philosophical
traditions.
Vaibhav Saria’s chapter (chapter 3), “The Pregnant Hijra,” takes up the question of
reproductive futures from a different angle. He tracks hijra aspirations for bearing chil-
dren and the future it promises, and the narratives of constant failure that accompanies
that aspiration by aligning the social and the mythological in a very creative way. Saria
asks what it is that survives this scene of failure. What survives, it seems, is the ability of
the hijra to turn her infertile body into a source of blessing for all couples to become
fertile; there is an exquisite play between curses and blessings in the way that all those
whose carnality rubs against the social in the wrong way are shown to be the figures
through whom ideas of true love acquire life. The vocabulary of science and technology
studies that now dominates anthropology makes us think of relations only as networks;
42 • N ATA L I T Y, S E X U A L I T Y, R E P R O D U C T I O N
or kinship as primarily a form of technology. Saria’s chapter offers a meditation on dif-
ferent ways of thinking of kinship—perhaps religious, perhaps mythological—for it
shows that the life that flows in us draws from other lives known and unknown. Living
on the penumbra of the social, the lives and loves of hijras show us our indebtedness to
forms of life that are tangential to the normative social order and yet necessary for its
continuity.
Anaid Citlalli Reyes Kipp’s chapter, “New Lives for Children,” and Eleana Kim’s “Tran-
snational Adoption and (Im)Possible Lives” both address the question of reproductive
futures through the figure of the adopted child. As Reyes Kipp points out, new laws have
redefined adoption in Mexico on the model of biological rather than contractual relations.
Legally, for the first time, adoption in central Mexico creates an irrevocable status that
extinguishes all previous kinship ties of the adoptee. The legal severance of all ties with
the birth family allows functionaries of the State to reconfigure families in such a man-
ner that poor women or those seen to have a dubious moral character are now unable to
claim any rights over their birth children. As the child becomes an emblem of the nation’s
futurity, kinship ties authorized by the State are much more rigid, to the exclusion of the
looser arrangements of fosterage or temporary adoptions through which the poor earlier
managed to retain connections between generations.
In her insightful analysis, Eleana Kim takes a close look at transnational adoptions in
the case of Korea that began in 1953 and grew massively in the decades of the seventies
and eighties, when poor women gave up their children for adoption to parents in West-
ern countries in the hope that they would have a better future there. As these women
grew into middle age and South Korea began to rewrite the story of its past as an orphan-
exporting nation, history and biography came together in uncanny ways. First, the label
for the children who were given up as “war orphans” came under tremendous pressure
as it became evident that these children were not orphans at all. Second, as the move-
ment to connect adoptees with their birth mothers in Korea (as is the case with many
other transnational adoptions), adoptees had to reimagine their pasts: while many joined
the movement to claim relatives who they did not know had existed, for others the new
revelations had to be reconciled with the actual lives they had lived in Europe or the
United States with loving parents and relatives. The birth into something new turns out
to be also a death or a disavowal of something old. The creativity with which the young
adoptees try to stitch these parts of broken biographies—and even for those who disavow
the pasts coming to light now, there is a haunting feeling of the possibility of some other
life that could have been theirs. If technologically assisted birth is accompanied with the
enormous grief of having to choose which embryos to preserve and which to destroy, the
lives re-created through adoption also might be steeped in the contradictory affects of
hope and grief at the inability to repair a past that comes unbidden.
The themes of sexual and reproductive violence in the context of the birth of a new
nation as described by Nayanika Mookherjee, in chapter 6, show the complex web of rela-
tions through which individual and collective futures tie the themes of sexuality, natality,
N ATA L I T Y, S E X U A L I T Y, R E P R O D U C T I O N • 43
and reproduction. The ordinariness of rape during periods of collective violence, and the
enormity of it that has come to light in several studies, still staggers the imagination: an
estimated two hundred thousand women were raped by Pakistani soldiers and their col-
laborators in a period of nine months during the war in Bangladesh in 1971. The deep
question of why women are raped during such social upheavals has no simple explana-
tion; in this case, Pakistani soldiers often claimed that making women forcibly pregnant
would improve the Bengali genes and make the country more Islamic. We should be cau-
tious in attaching too much explanatory weight to such statements, but they do show how
large political projects come to haunt or distort the experience of carnality and intimacy.
Bangladesh, in embracing the project of rehabilitation of the raped women and proclaim-
ing them to be “war heroines,” reversed the everyday notions of shame and abandonment
that were the staple of Partition stories in India in 1947. Yet in inaugurating the new
nation, the children born of such unions could not be absorbed into the body politic:
either women were “cleansed” through abortions, or the children were given away in
transnational adoption. The disconnect between national regeneration and the expulsion
of the children to an elsewhere is still unfolding. Mookherjee’s chapter provides an impor-
tant commentary along with that of Kim and Reyes-Kip on the relation between the shap-
ing of intimacy and the imagination of the polity in terms of race, nationality, and religion.
The absorption of the natural in the social as seen through the lens of reproduction
rehearses some familiar themes of the biopolitical state and its differential evaluation of
different kinds of lives, but these essays also show that the biopolitical is itself shaped by
older lineages of thought derived from religious or mythological imagination through
which family, kinship, and nation learn to shift their horizons.
With Sylvain Perdigon’s chapter, “Bleeding Dreams,” we come back to the scene of the
everyday—but a wounded everyday, in which Palestinian refugees in the camps of Tyre
in Palestine try to make sense of their encounters with al-Qireyne. Lying between the
experience of dreaming and (dis)possession, al-Qireyne is said to be particularly danger-
ous to pregnant women. In the camps of Tyre, war is not encountered through the dra-
matic enactment of sexual and reproductive violence as it was in Bangladesh, but its
injuries are registered in the bodies of women, manifested in the anxieties that surround
them regarding their ability to provide care to their children in such fraught circum-
stances, or even their ability to carry a fetus to full term. Above all, there is the devastat-
ing, unsaid question of what is owed by the living to the dead. With the proliferation of
trauma discourses in global humanitarian discourse to mark the condition of Palestinian
refugees, can we say that they have lost the ability to engage a future? Perdigon is not
contesting that the trauma of war might manifest itself through the displacement of
violence onto one’s intimate relations, but he is pointing to another alternate space that
is created to attend to the quandaries of kinship through which everyday life is engaged.
The picture he presents is not a comforting one, but it is one that asks us to think of how
people in a torn and conflicted world attend to the task of creating sustenance for them-
selves and for the generations to come.
44 • N ATA L I T Y, S E X U A L I T Y, R E P R O D U C T I O N
Together these seven chapters help to inaugurate the discussion on how the scene of
natality is also turning out to be the scene of mortality in our cotemporary conditions.
Reproduction is far from automatic or habitual; the whole domain points to the task
entailed in the being-together that must be forged in the face of the experience of death
and dying of individuals, of relationships, and of the body politic itself. The chapters are
also a demonstration of how forms of life nurture forms of dying and of the fine nego-
tiations between a changing milieu and the adventures and risks that individuals take for
everyday forms of crises.
N ATA L I T Y, S E X U A L I T Y, R E P R O D U C T I O N • 45
1
MATERNAL MORTALITY,
TECHNOLOGICAL INNOVATIONS,
AND THERAPEUTIC STRATEGIES
47
discussion of these issues in a comparative context.) Looking at the interventions on
reproductive health that address this most ordinary of tragedies will, we hope, enable us
to better decipher the dynamic of the family and the state in this crucial area of social life.
CONTEXT
India accounted for 20% of the globally estimated maternal deaths and 30% of neonatal
deaths worldwide in 2010 (UN Interagency Group for Child Mortality Estimates 2013).
Although the rates of maternal mortality declined in India between 1999 and 2010, a
rate of 212 annual deaths per 100,000 births (Vora et al. 2009) is still considered unac-
ceptably high. As with several other indices of public health, the aggregate figures hide
a huge regional variation. Whereas Kerala, Tamil Nadu, and Maharashtra show a steep
decline in maternal mortality, with a maternal mortality rate (MMR) of 81, 97, and 104,
respectively, nine other states (Rajasthan, Uttarakhand, Uttar Pradesh, Madhya Pradesh,
Chhattisgarh, Orissa, Jharkhand, Bihar, and Assam) account for 62% maternal deaths in
India (Randive, Diwan, and De Costa 2013).
The government of India has, over the years, instituted several national-level programs
to reduce maternal mortality. The most significant of these programs were the Child
Survival and Safe Motherhood Program (1992–97) and phase one of the Reproductive and
Child Health Program (1997–2004). The emphasis in these programs was on improving
institutional capacity by increasing the availability of emergency obstetric care. Despite
what were seen as improvements in supply-side factors, the decline in maternal mortality
was slow. Although the proportion of institutional deliveries in this period increased from
26% to 41% and skilled birth attendance increased from 33% to 47%, further reduction
in maternal mortality was seen in policy discussions to be dependent on increasing the
demand for institutional births. A consolidated program for improving rural health that
was implemented in 2005 placed special emphasis on reducing maternal and infant mor-
tality in rural areas, especially in eighteen states with poor public health indices. Figure
1.1 gives a rough timeline for the different programs initiated since 1945 and shows the
shift that has happened—at least in officially stated norms—from family-planning initia-
tives to programs that address safe pregnancy and safe delivery.
The mission statement of the National Rural Health Mission (hereafter NRHM)
might be regarded as a turning point in health policy toward the goal of increasing insti-
tutional births as a means of reduction of maternal and infant mortality, especially in
rural areas in underserved states. This shift in policy followed the recognition at the
global level that the policy of training midwives, or “traditional birth attendants,” to
address maternal deaths was not working and that the causes of maternal deaths such as
undiagnosed preeclampsia, severe bleeding, infections, and anemia required facilities
for emergency obstetric care.
The core strategies of the mission statement of NRHM (NRHM 2013) emphasized local
control and empowerment, and toward this end a new cadre of female health workers were
1945 1950 1955 1960 1965 1970 1975 1980 1985 1990 1995 2000 2005 2010
1951 1983 1997
FW program included the maternal National Health Policy - 1983 National Population Policy - 2000
health program as part of its MCH
component
Reproductive and Child Health
programs - Phase 1
Convergence of family planning and
CSSM program and inclusion of
services for RTIs/STIs
figure 1.1
Policies and programs for reducing maternal mortality in India from 1945 to 2010. (FW, family welfare;
MCH, maternal and child health; FP, family planning; RTIs, reproductive tract infections; STIs,
sexually transmitted infections.)
created. They were called ASHA workers—from an acronym for Accredited Social Health
Activist. (The word asha also implies “hope” in many Indian languages.) The mission state-
ment also envisaged the enhancement of facilities at primary health subcenters, which,
along with more skilled staff and equipment, is also given unassigned funds under the
control of local elected bodies.
The main feature of the ASHA workers was that the recruitment process was left in
the hands of a locally elected body such as the village or block-level panchayat, to which
the ASHA worker was to be accountable. She was to be “the interface between the com-
munity and public health system” and also to assist the ANM (auxiliary nurse midwife),
who is usually responsible for conducting antenatal checkups and maintaining village-
level records with regard to pregnancy, childbirth, and the immunization of children.
Many ANMs also conduct deliveries at the level of primary and community health cent-
ers, though complicated deliveries were to be referred to the district hospital, where
facilities for cesarean sections and blood banks are available. The idea behind this distri-
bution of roles seems to be that because the ANM is seen as a salaried employee of the
government, the ASHA worker, as someone far better integrated into the village com-
munity, could assuage any fears women and their families might have of government-
run facilities and thus make them more accessible. Accordingly, the ASHA workers do
not receive a regular salary but are given case-wise compensation or incentive for each
institutional delivery if they accompany the pregnant woman.
In addition to these features, India also launched a program of conditional cash transfers
to women who gave birth in a government facility (fourteen hundred rupees in each case of
delivery) in the high-focus states that had high rates of maternal mortality, under a new
MATERNAL MORTALITY • 49
scheme entitled Janani Suraksha Yojana (JSY) in 2005. It was hoped that with the incentive
of cash rewards, demand for institutional births would register significant improvement.
However, using secondary data from two large population-based national surveys—Sample
Registration Survey and Annual Health Survey, both conducted by the government of
India—Randive, Diwan, and De Costa (2013) recently concluded that though institutional
births had gone up significantly in the nine states mentioned above (from 20% to 49% in
five years), the impact of institutional deliveries on the reduction of maternal mortality
seemed to be marginal.1 Other studies point to the same results. Thus, Lim et al. (2010)
reported that implementation of JSY in 2007–8 was highly variable across different states—
from less than 5% to 44% of women who had given birth in medical institutions receiving
the cash incentive. The authors found that the poorest women were generally excluded.
They calculated that although JSY had some impact on the reduction of perinatal and neo-
natal mortality, they could not detect any impact on the reduction of maternal mortality. Lim
et al. based their findings on statistical data made available through district-level household
surveys conducted at two data points: 2002–4 and 2007–9. More localized studies led to
similar results. Thus Gupta et al. (2012) reported on an observational study conducted in a
tertiary hospital in Madhya Pradesh comparing data on changes in institutional births and
maternal mortality between 2003–5 and 2005–9. They found that although institutional
deliveries increased under the JSY scheme by 42.6%, the absolute number of maternal
deaths also increased in this period. It seemed likely that because the hospital served as a
catchment area, the cash-transfer scheme enabled cases in which complications arose dur-
ing delivery (but in which the mother could not be saved) to be brought to the hospital.
So what kind of story might one tell from these figures? Randive et al. (2013) draw two
lessons from the statistics that are of relevance here. First, they offer the hypothesis that
the conditional cash transfers attract more women with uncomplicated pregnancies to
the institutional settings; if complicated pregnancies are primarily happening at home,
they argue, it is likely that institutional births would not have a significant impact on
maternal mortality. However, in the absence of reliable estimates of the proportion of
women with complications who give birth at home versus those who undergo institu-
tional deliveries, it is hard to say anything conclusive about this issue. The second spec-
ulation is that though more women are giving birth in institutional settings (both public
and private), the quality of care in these institutions is poor. An evaluation report of JSY
stated that very few public-sector institutions actually have the facilities for attending to
complicated births. It is likely, then, that many rural women manage to reach only those
facilities that are not equipped to deal with complications of pregnancy (Lim et al. 2010).
Finally, one of the important innovations made under the National Rural Health Mis-
sion, a program launched in 2005 by the government of India to improve health infrastruc-
ture especially for poorly served rural populations, was the introduction of an ambulance
service as a public–private partnership with GVK and EMRI, who are considered to be
pioneers in emergency medical management in India. The success of the program, first
introduced in Andhra Pradesh, led the government of India to take the responsibility of
I N N O VAT I O N , I N T E RV E N T I O N , A N D T H E F I E L D
O F S O C I A L R E L AT I O N S
The term institutional delivery stands not only for the actual event of birth in a medicalized
space but also for provisions for a medical oversight of the entire period of pregnancy
that would ensure the health of mother and child. Toward this end, the recommendations
for the implementation of JSY included at least four antenatal checkups (ANCs), includ-
ing maternal immunization against tetanus, regular monitoring of the pregnant woman’s
weight and blood pressure, and advice on nutrition as well as diagnostic tests for diabetes
and HIV infection.
In much public health discussion of the demand-side statistics, the pregnant woman
is seen as either compliant or noncompliant—depending on whether she chooses to give
birth in an institutional setting or at home. This binary of compliant versus noncompli-
ant women is premised on the idea that a medical innovation such as the inauguration
of the JSY program has a teleological goal and that the success of the program depends
on the ability to devise measures through which success or failure may be measured. We
do not contest the importance of using measures such as MMR and IMR (infant mortal-
ity rate)—but we are interested in asking whether an innovation might be seen as releas-
ing a number of potentialities that families and health care workers might be able to use
in ways that are different from how these innovations were envisaged by policy makers.
Said otherwise, What are the field of possibilities and the network of relations within
which an innovation comes to be implemented? Already, from the works of scholars such
as David Mosse (2005), we know that a development scheme may have multiple intended
and unintended consequences and that these might be very differently evaluated by a
range of actors who are affected by the scheme. (See also Goodfellow 2015 for an analysis
of small technologies and their impact on social relations.) Yet official evaluations have
no means of taking account of these multiple outcomes, focusing only on those out-
comes that are officially recognized as the aim of the scheme.
MATERNAL MORTALITY • 51
In our research, we did not follow the usual anthropological method of intensive work
at one or more sites over a long period of time. Instead, our team carried out an initial
investigation into the variety of ways that the JSY program was implemented at the level
of primary health centers (PHCs), community health centers (CHCs), first referral units
(FRUs), and district hospitals as cases moved up and down from the home to the insti-
tutional spaces where deliveries were taking place in two districts in Uttar Pradesh and
two districts in Gujarat. Uttar Pradesh is a high-focus state under the JSY program
because of the low rate of institutional deliveries. In contrast, Gujarat is a low-focus state
for JSY and had earlier implemented a statewide program to promote institutional deliv-
eries called Chiranjeevi Yojana (CY).
In all we visited eighteen villages in two districts in Uttar Pradesh and nine villages
in two districts in Gujarat and conducted over 250 interviews with health officials, med-
ical officers, ANMs, ASHA workers, traditional midwives (dais), village headmen, expe-
rienced women who help with deliveries, pregnant women, and mothers as well as mem-
bers of households in which birth had taken place in the last few years. Observations
were conducted at every level of the local health system, with one member of the team
taking notes of interactions for two to three hours at the peak time of patient visits. In
addition, we attended meetings of ANMs and ASHA workers at the PHC, where we had
the opportunity to ask questions and learn about the difficulties that these women were
reporting. We did not observe any birth in process, but we did interact with women and
their family members as they waited in PHCs or in the hospital. Finally, there were two
focus-group discussions in Delhi, one with ASHA workers and ANMs and the other with
women from one of the slum areas in Sector V from NOIDA, in the National Capital
Region, conducted in the pilot phase of the project. Though lacking in depth, our data
gave us a perspective on the wide variety of concerns that people expressed as well some
emerging patterns that we could detect in the way birth was being reimagined as a pro-
cess that happens outside the domestic space. Our focus in this chapter is on the two
districts of Uttar Pradesh that we visited (Allahabad and Bareilly), because adding Gujarat
to the already-complex issues of variations that we encountered in the field in Uttar
Pradesh would have made the chapter unwieldy.
M AT E R N A L M O RTA L I T Y A N D S TAT E I N T E RV E N T I O N
In what Michel Foucault (2000) called “governmentality” morally laden messages and bio-
medical techniques flow across boundaries between institution and non-institution, between
real and ersatz doctors, clinics and households. . . . Where bona fide health institutions are
concerned, governance is made up of recurring, short-term schemes aimed overwhelmingly
at limiting births, though many also intend to provide care, often in traveling “camps” and
by way of local agents. . . . Amid the cycling of schemes, things meant to be permanent—
government health centers and hospitals—are at best unreliable, at worst empty shells, a set
of inconsistencies and uncertainties in which poor infrastructure means not knowing when
and for how long there will be electricity, when or if a bus will come, when or if a doctor will
be present at the health center, how much one will be expected to pay. (362)
As an example of the recycling of government schemes that come and go, Pinto
explains how the family-planning scheme active in 2001 ceased operation in 2006 while
a new government rural health program began its early stages of design and implemen-
tation. Pinto’s description of the geographies of blame that she tracks in the government
documents is very effective in showing how stereotypes of women (especially those from
lower castes) as ignorant and uncouth were sustained in government documents. How-
ever, Pinto does not actually show us how new innovations are absorbed or abandoned;
the descriptions of schemes remain general rather than specific. Thus, instead of looking
at the specifics of the new scheme, she assumes that there is continuity with earlier
schemes. To cite Pinto: “The ‘dai trainings’ [the term dai generally refers to traditional
birth attendants, or TBAs] so often presented by NGOs and the government as part of
‘innovative’ designs have been a familiar feature of intervention from the late nineteenth-
century, and the village health worker, with an ever-shifting set of responsibilities, has
been a staple of post independence health planning” (2008, 362).
Though our data lacks the depth that comes from intensive long-term work in the
same site, as in Pinto’s work, it is more attentive to discontinuities and the variations that
we encountered in the course of our investigations in the different villages and PHCs in
both Uttar Pradesh and Gujarat. Part of this variation, we submit, comes from the differ-
ent ways in which the different provisions encoded in JSY under NRHM were adapted
and even transformed as women and families devised therapeutic strategies to take
advantage of the presence of ASHA workers, the new ambulance service for transporta-
tion of pregnant women and their children, and the conditional cash-transfer scheme.
There was also a changed communicative landscape brought about by the availability of
cell phones and improved infrastructure of roads in many villages we visited. Some state
governments such as that of Karnataka had made the distribution of cell phones to
ASHA workers part of the NRHM scheme since 2013. In other states such as Uttar
Pradesh, a scheme for providing mobile phones to ASHA workers was launched by the
MATERNAL MORTALITY • 53
chief minister in January 2013, but systematic data and follow-up studies on the imple-
mentation of this scheme are lacking. At the time of our fieldwork, ASHA workers had
access to mobile phones but could also use any phone available within the household or
the village headman to call the ambulance service.
Within the complex web of health professionals found at the local level, the ANM, the ASHA
worker, and the traditional (trained or untrained) dais stand out as those with the necessary
skills to help in the pregnancy and delivery process. Of these three, the ANM receives two
years of basic training in maternal and child care and is responsible for maintaining village-
level records on pregnant women and infants, immunization, and antenatal checkups, as
well as for conducting uncomplicated deliveries at the PHC level or at CHCs where facilities
for deliveries are available. The ASHA, as described earlier, is a village-level worker who
receives some training in health education but whose main job is to provide a link between
the pregnant woman, her family, and the medical facility where the pregnant woman is to
be taken for antenatal checkups, delivery, and postnatal checkups. The ASHA worker is
supervised by the ANM assigned to a particular area. Dais, or “traditional birth attendants,”
typically learn their craft from older women in their own caste groups and from other dais
but some received short-term training under different government training programs that
have now been discontinued. Dais were usually from the lower castes, since the work of
assisting at delivery was considered polluting. With the new emphasis on institutional
deliveries JSY scheme, the role of the dais is not officially recognized, but we found that
some dais had found employment in government hospitals or in private nursing homes as
helpers or ayahs. Finally, in Uttar Pradesh, we found that dais continue to assist in home
births but that in Gujarat the profession seems to have all but disappeared as institutional
births have become the norm. Finally, among some caste groups in Uttar Pradesh, it was
the elder women of the family who assisted at births, with no assistance from any other
attendant, though in cases of difficult birth or other complications they might try to trans-
fer the woman to a specialized facility. Even when older women or other relatives conducted
the delivery, the task of cutting the cord and burying the placenta was assigned to a dai or
a woman of a lower caste among both Hindus and Muslims.
We give below short descriptions of how the availability of ASHA workers and the
conditional cash transfers have led families to reconfigure their relation to the traditional
practices of childbearing even as they learn to take advantage of new opportunities that
have become available to them.
C A S E 1: M E E R A D E V I
MATERNAL MORTALITY • 55
had begun to integrate these provisions in a variety of ways to craft their therapeutic
strategies through which pregnancy and birth were managed. However, it is important
to note that a straightforward mapping of the differential utilization of existing services
to caste or religious hierarchies would be misleading. Whereas the ASHA worker played
a rather cursory role in the care of Meera Devi, whose relative affluence and connections
meant that she could use other resources to receive the kind of care her husband and she
thought appropriate, the next case shows how important the ASHA worker turned out
to be in the therapeutic decisions of another family—one that did not possess the mate-
rial and symbolic capital of Meera Devi’s family.
C A S E 2 : P U S H PA
The second case we describe is that of Pushpa, a Dalit woman who lived with her hus-
band’s mother and her two-and-a-half-year-old son at the edge of the same village. Dalit
households, assigned the lowest position in caste hierarchy, are typically located at a
distance from the upper castes in multicaste villages. Pushpa’s husband was a daily wage
laborer who worked in the city and hence was able to visit the village only periodically.
The field diary kept by Rajan Singh, an ISERDD team member, describes the material
conditions of the house as follows: “At the edge of the village were a line of houses in
which Dalit families live. The tiny houses were made of mud and straw—there was one
small room in which there was nothing except a string cot. Some clothes were hanging
on the wall.”
Pushpa was very forthcoming with her story. She had been married for six years. She
became pregnant in the third year of her marriage. The ASHA worker came to her house
to register her name and then took her to the CHC at Kondhiyara (the block headquar-
ters, an administrative unit lower than the district), where she gave blood and urine
samples and received a routine ultrasound screening. She was given iron tablets and a
nutritional supplement and advised to return for a follow-up after three months. The
ASHA worker visited her every two or three months and gave her advice on nutrition, on
activities to be avoided, such as lifting heavy objects, and on the maternal immunization
she was to receive. She recalled receiving an injection from the ANM but otherwise did
not go back to the CHC for any checkups.
In the ninth month, when Pushpa experienced labor pains, she phoned the ASHA
worker, who took her to the hospital in an auto rickshaw—even paying for the transport.
A staff nurse attended the delivery after Pushpa was put on a glucose drip. Pushpa felt
that the birth was quicker because of the drip and that overall she was treated kindly. She
attributed the care and kindness to the fact that she was familiar with both the ASHA
worker and another ANM who used to visit the village regularly. “I will go to the hospital
for my next delivery, too, because there are good facilities in the hospital,” she told us.
Pushpa also received fourteen hundred rupees, and though some of this money was used
MATERNAL MORTALITY • 57
C A S E 3: R A H I M U D I N
Rahimudin, a thirty-year-old man with four children, stated that all his four children were
born in government-run facilities—the younger three in the PHC in a nearby large village
and the oldest in another PHC in a somewhat distant village where his wife’s parents
resided. His wife had gone for the first delivery to her parents’ village. In each delivery
his wife received help from the ASHA worker to push forward the claim to receive four-
teen hundred rupees, as these were institutional deliveries, and his wife was successful
in receiving this amount. He was not sure what kind of diagnostic or preventive care his
wife received in the prenatal checkups—which is not rare for men who claim they know
little about “women’s affairs.”
Rahimudin was critical of the kind of care patients generally received in government
facilities, pointing to widespread absenteeism and corruption, but said that the presence
of ASHA workers had made it easier for women to get better care in government facili-
ties. He narrated an incident when he had fractured his arm and the doctor at the CHC
asked him to come to his private practice for consultation, where he was charged five
thousand rupees for diagnostics and treatment. This was despite the fact that facilities
for X-rays and treatment of factures were available at the CHC. He added that “without
medicines and injections, women cannot give birth easily.”2
CASE 4: SARFRAZ
Sarfraz was older (about forty years old) than the other three men we met. He said that
all his four children were born at home. When his wife became pregnant for the first
time they had gone to the government hospital for a checkup. A nurse in the hospital had
given a cursory checkup and asked his wife to come back the next month. His wife found
the nurse to be curt, if not outright rude. She also told him how many women were
screaming in pain but no one among the hospital staff was giving them any attention or
offering comfort. Sarfraz also added that in government facilities, they “make a cut even
before the pains have started” and this makes the woman very nervous (aurentein ghabra
jati hain). They had decided to have the birth at home with the help of the local dai,
and since the first birth went well, they followed the same procedure for the next three
births.
Though all four babies had been born at home, Sarfraz said that the ASHA worker
had put in enormous efforts to secure the cash incentive in the case of the last two births
and so had taken his wife soon after the birth to the PHC to get the checks for institu-
tional delivery issued. Out of the fourteen hundred rupees, she had given nine hundred
to his wife and kept the rest as the fee for her own efforts to get the money. Sarfraz did
not resent the ASHA worker taking a share of the money since she had to put forth extra
effort to get the cash compensation—showing that ideas of corruption and fairness
might be at odds between policy makers and users.
C A S E 5 : M U M TA Z
What is women’s experience of institutional deliveries in the Muslim villages? It’s inter-
esting that younger women expressed opinions about the desirability of medical interven-
tions that were quite different from the views of older women and men. For instance,
Mumtaz, a young woman, said, “Bas jao, sui lagaate hain, pani chadate hain aur ho gaya
baccha—as soon as you go there, they administer an injection, put you on drip, and the
child pops out.” From this woman’s perspective, a pressing issue was that of the manage-
ment of pain and the shortening of labor. Even as concern is rightly expressed in the
medical community about the overuse of drugs such as oxytocin to stimulate contractions,
the policy documents are silent on the management of pain. Though for the women the
concern with the safety of the mother and the child and its relation to the competence of
the person conducting the delivery is paramount, it is not unlinked to the question of
how pain is managed. Mumtaz said that it was important for the jaccha (birthing mother)
to receive companionship and care. Mumtaz said that some nurses in the hospital were
very unsympathetic if she cried out in pain, admonishing her or even slapping her.
One of the older men said that women were given very little information on what
would happen during the delivery and so were dependent on bits of information that they
MATERNAL MORTALITY • 59
had picked up from others who had attended meetings called by health officers or learned
from neighbors about the actual experience. As one older woman who had all her chil-
dren at home said, “Earlier, there was a fear of the unknown among women. They won-
dered, How will a child be delivered? Will the doctor use instruments? How will the baby
be pulled out from the womb? They feared that they may be administered a wrong injec-
tion or their vaginas might be ‘cut’ or they might be operated upon, after which they will
become weak and may not be able to conceive again.” Another woman explained, “Aurat
mein nuks aa jaata hai” (literally, “a defect comes in the woman”).3
What is this “defect,” and what “operation” is being referred to? Unpacking this enig-
matic statement will help us see how the use of modern biomedical techniques is seen
both as a lure and as something to be feared. The term operation is a multivalent one—
referring to both the possibility of a cesarean section and a sterilization operation. Dais
often summarized the hospital experience as that of being administered a “cut”—refer-
ring to operations as well as the performance of episiotomy. Although medical opinion
is rightly wary of an increased use of episiotomies and oxytocin injections to manage
labor in India and other low-income or middle-income countries as a routine measure,
women might be alternately attracted by the possibility of less pain and its implied prom-
ise of safety for mother and child or apprehensive as to what such measures might do to
their sexual and reproductive futures.
T H E C U T A S M E D I C A L I Z E D B I RT H
MATERNAL MORTALITY • 61
baby could be monitored. The explicit reason they gave for this action was that it was
difficult to entertain relatives who would come visiting when they were in the PHC or
CHC. It seems likely that they might be avoiding a discussion on sterilization or contra-
ceptive advice. But in the light of statements by ANMs that they were able to meet their
targets for sterilization quite easily, it seems likely that the desire for controlling pain
during childbirth also makes the woman available as a body to be targeted for contracep-
tive advice and even sterilization. Instead of assuming, then, that the rates of sterilization
are a result of subtle coercion by state functionaries, it might be important to think about
how the medical space might offer an opportunity to negotiate norms that younger
women feel are being imposed on them by older women.
T H E M AT E R N A L B O DY
The dominant health-policy narrative of how to reduce maternal mortality in India has
shifted from thinking of the training of dais and the re-forming of traditional practices
of childbirth as a major pivot for maternal health policy to thinking of institutional births
as the major policy tool for this purpose. As this discourse shifted, so did the representa-
tion of the dai from being a major ally to the major obstacle in realizing the goal of reduc-
ing maternal mortality. The strategy of relying on traditional birth attendants was already
under pressure in 2001 when a review of evidence showed that it had little direct effect
on maternal mortality (De Brouwere and Van Lerberghe 2001). Longitudinal data from
Bangladesh suggests that maternal mortality declined despite the low level of skilled
attendance at births partly because of the significant decline in mortality from abortions
and partly because of emergency care. Thus any firm conclusion about the association
between the increase in institutional births and the decrease in maternal mortality cannot
be sustained. Nevertheless, this has not stopped health officials from blaming the dais
for creating obstructions to the fulfillment of this policy.
Anthropological work on dais argued that the work of traditional midwives was con-
sidered so degraded and polluting that there was little scope for improving maternal care
through training them since training did not improve their social status (P. Jeffery et al.
1987). On the opposite side was a passionate defense of the knowledge and practices of
dais by feminists such as Janet Chawla (2006), who felt that the knowledge the dai com-
manded had the status of subjugated knowledge and that there should be a system of
referrals so that they could get help in the case of complicated births, but that normal
birth should take place within the domestic space in a comforting and joyful atmosphere.
At issue for Chawla has been the question of restoring the joyful aspect of pregnancy and
childbirth rather than treating it as purely a medical condition.
We think Chawla is right: while child birth is thought to be polluting, requiring the
specialized services of lower castes, it is also seen as an auspicious event, full of joy and
celebration. The texts on ritual make a distinction between the auspicious pollution
(shubher ashauacha) of childbirth and the inauspicious pollution of death (Das [1976]
MATERNAL MORTALITY • 63
the mandatory forty-eight hours. Families will often choose where to go for delivery
according to the reputation of the ANM and will sometimes travel to a more distant CHC
because a reputed ANM is located there. They also use the practitioners in the local
markets for any other illnesses that might crop up during the pregnancy or after birth.
Although safe delivery is a shared goal between the families and the medical system, the
maternal body is a much more complex entity in the social world than it is in the medical
imaginary.
In the introduction to this chapter we pointed out that while new reproductive tech-
nologies are seen to raise profound issues about the conjoining of life and death, the
ordinary tragedies of maternal and infant mortality raise an equally profound but differ-
ent set of issues. Here death is present in the very crevices of everyday life: in the figures
of the woman who wants to limit future births because grief of miscarriages and still-
births is overwhelming; in the desire for technologies that would make the pain of child-
birth easier to bear; in the fear and apprehension that something might go wrong during
a delivery at the hospital or that the dai might realize too late that this particular delivery
is beyond her competence. What we encounter here is not dramatic choices regarding
which embryos to save and which to destroy but rather the interweaving of the social
model and the medical model in such a way that death can be held at bay. For that very
reason it is a challenge to describe the manifold desires and fears, the braiding of hope
and anxiety, that arise out of the feeling that even slight changes, such as the addition of
a new cadre of ASHA workers, might have consequences not intended by the designers
of the policy. In the final analysis the issue is not simply that of increasing institutional
births but making sure that preferences of women can be respected in a way that pro-
vides for safe and joyful motherhood.
N OT E S
The following authors belonging to the Stanford–ISERDD Study Collective contributed to the
fieldwork, analysis, and writing of the report: Bina Choi, Roopa Das, Mita Deshpande, Charu
Nanda, Meera Ragavan, Himabindu Reddy, Roshan Shankar, Rajan Singh, Geeta, and Purshot-
tam. The group was collectively supervised by Veena Das, Nomita Divi, and Grant Miller. Veena
Das took primary responsibility for the final writing. The authors gratefully acknowledge the
generous help provided by Dr. Rajiv Tandon and Dr. Anuradha Jain from Save the Children
India in helping to negotiate the field visits and for their comments. Finally, many thanks to
the villagers, and to the health workers in the PHCs and the CHCs, who answered out ques-
tions ungrudgingly and offered us hospitality.
1. The wide variation in the success reported by different states in India seems to pose
important questions for future research. Thus, for instance, Tamil Nadu reports a dramatic
increase in institutional births (97.7% in 2007–8) and a reduction of maternal mortality (MMR
down from 380 in 1983 to 90 in 2007). Based on an analysis of secondary materials and a
case study of one PHC (primary health center), Padmanabhan, Raman, and Mavalankar (2009)
conclude that supply-side interventions—such as a state-level system of surveillance and audit
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Emerging biotechnologies are radically readjusting the meaning of life and death. In the
biotechnological terrain, the seemingly opposing ends of the life course emerge curiously
“conjoined” as the very process of conceiving and supporting life becomes imaginable as
always pregnant with death. Life mediated by biotechnologies has a fraught and continu-
ally evolving ontological status. Following Canguilhem (1989), biotechnological “life” can
be imagined as a constant but only partially successful attempt at resisting death. The
biotechnological trickery lies in cheating death while unwittingly turning living into
resisting the inevitable. To live in the biotechnological mode is to continually negotiate
with death—to define and interpret it. As Margaret Lock (2002) so eloquently shows,
death is not self-evident; the space between life and death is constructed, complex, and
open to dispute. In a similar vein, notions of “good death” (Green 2008), mythic con-
structs of “sudden death” (Timmermans 1999), and assertions of the “right to die”
(Richards 2012) occupy an ambivalent cultural space around the globe, as biotechno-
logical mediations perform the double-jointed task of both resisting death and empower-
ing life.
While anthropology has done much to deepen our understanding of “beginnings
and ends of life” (Kaufman and Morgan 2005), the life-and-death questions stalking
biotechnologically assisted forms of life have received less critical and cross-cultural
attention. This is especially true if we shift our ethnographic gaze from biotechnological
interpolations into macro-anatomical forms (Waldby 2002) to conceptions about life and
death at cellular, microscopic levels (Landecker 2003). As anthropology grapples with
67
life and death on the threshold of human tissue and molecular intricacies, it is perhaps
timely to revisit not just life but death itself as forever emergent. In other words, if life in
late modernity is outrunning the pedagogies in which we have been trained (Fischer
2003), death ought to compel a similar reimagining (Franklin and Lock 2003).
In this chapter, we turn our attention to two of the most powerful biotechnologies of
life: stem cell technologies and assisted conception. We argue that in order to make,
gestate, and support life, these technologies are in fact replete with “little deaths.” We are
not suggesting that some deaths are “little” because they are not devastating or are in
some sense insignificant. On the contrary, our intention is to show how both temporality
and scale are implicated in the “early ends” of technologically mediated life, and how
these “early endings”—having so far received little analytical attention—affect the lives
of others. In so doing, we also wish to show how the experience of early life and death is
burdened by the bioethical and now increasingly bureaucratically expedient question,
When does life begin? Not surprisingly, then, logics structuring the governance of bio-
technologies of life around the globe seldom acknowledge or account for the experience
of little deaths embedded in “sensibilities populating the everyday” (Das 2012). It is
essential to bear in mind that little deaths are not so much about personhood imputed,
assumed, or ascribed as they are about persons and institutions directly or indirectly
implicated in biotechnologically mediated life-and-death conundrums.
Little deaths in the biotechnological mode can be, ironically, “life altering.” As we
hope this chapter will show, they can impact and shape conceptions about loss and pre-
mature endings as well as regeneration and perpetuation. Drawing upon our ethno-
graphic immersions into the inextricably linked local moral worlds of stem cell genera-
tion and assisted conception in India and the Muslim Middle East, our argument traces
five main intersections of life and “little deaths”: (1) the creation and early loss of the
“elusive” embryos created in in vitro fertilization (IVF) labs; (2) the altruistic, life-giving
donation of embryos that are then “destroyed” for the purposes of stem cell generation;
(3) the attempts to prolong the lives of the dying through human-embryo-generated
therapeutic stem cells; (4) the calculated “deaths” of excess fetuses created through
assisted conception; and (5) the unintended deaths of lives brought into existence
through IVF and related biotechnologies. Although the moral and ontological meanings
associated with these life/death intersections are multiple and prone to mutation, they
nevertheless remain culturally specific, as illustrated through ethnographic vignettes
from India and the Arab world.
A S S I S T E D, D E S I S T E D
From assisted conception to embryonic stem cell generation, the embryonic form has
emerged as one of the key ingredients in the biomedicalization of the human life course
(Clarke et al. 2010). Stem cell research and clinical application in India, for example, has
located the human embryonic form on the intersection of ethical, legislative, and clinical
REDUCTION, ENHANCEMENT
The biotechnology of stem cells drawn from embryonic sources is embroiled in protracted
ethical and moral panics around the globe. This disquiet has come to rest on profound
concerns over the ways in which advances in research may precipitate an insatiable
demand for the creation and destruction of human embryos. The fear of a limitless
demand for “embryonic death” in the service of “life-supporting” therapeutic interven-
tions has polarized public and political opinion for and against such interventions in
the United States and beyond. Recent therapeutic developments in India, however, chal-
lenge this view, both at the level of established scientific practice and in prevailing public
moral uncertainty. The ethnographic focus on a clinic in New Delhi offers a compelling
illustration of the therapeutic application of human embryonic stem cells, despite domes-
tic and international regulatory unease at the rapid translation from bench to bedside
(Jayaraman 2005).
Since the year 2000, a major New Delhi clinic has offered human embryonic stem
cell therapies for a range of disorders such as diabetes, multiple sclerosis, Parkinson’s
disease, cardiac conditions, spinal-cord injuries, and Lyme disease. The stem cells at the
clinic are all derived from a single, left-over embryo from an IVF cycle. With informed
consent from the couple, the embryo was put through a series of tests, including the
medical and genetic history of the donors, to determine the viability of any resulting stem
cell lines. The clinical director controversially claims that, theoretically, one human
embryo can generate enough cell lines to treat the entire human population. Thus for
nearly ten years a single embryo has purportedly supplied stem cells for a diverse range
of conditions for more than one thousand patients.
This suggestion puts a very different perspective not only on the prevailing “panics
and ethics” surrounding the use of human embryos for stem cell generation (Bharadwaj
2012), but also on the very notion of “supplementarity”: an ability of individuals or popu-
lations to constitute their longevity through access to the organic forms of other persons
(Cohen 2010, 253–54; 2003). If, indeed, a single embryo can divide into perpetuity to
supply cells for therapeutic use, then a one-off “death” of “little” magnitude could rapidly
T E R M I N AT I O N , C O N T I N U AT I O N
Going through this process, you think differently. If I had naturally conceived a couple of
children, I would not think about it, but I feel I am reaping the benefits of someone’s sac-
rifices. You realize the value of something. . . . I now view an embryo as a child. If I had
thought like this before I would not have gone for MTP. So, going through this difficulty
[i.e., secondary infertility], you feel differently. Until I went through this process, I viewed
it differently. But when it actually hits you, you realize how much of a difference it makes
to your life. Otherwise, it’s drawing-room talk. Only when it hurts [do] you realize how
much it hurts.
In Rekha’s pursuit of conception, her worldview was riddled by guilt and frustration.
The pregnancy termination stood out as a thorny subtext in her reproductive biography.
She regretted the decision taken all those years before as she struggled to look after her
“preemie baby.” However, this decision and its subsequent biographical reverberations
served to forge an empathetic connection with her “terminated” embryo, to the point that
she now saw in the embryonic form a potential sibling for her son. Her worldview was
shaped not by some rhetorical investment in bioethical, religious, or bureaucratic
attempts at ascribing sentient potentiality to an embryo, but rather by a deeply personal
struggle with secondary infertility and the guilt of believing that her decision to opt for
termination of an earlier pregnancy was now responsible for her current predicament.
Rekha used the word chilling to describe the thought of giving up an embryo for research.
But she also felt that sacrifices had to be made for science. Throughout her interview, she
oscillated between the old Rekha, who had opted for the pregnancy termination, and the
new Rekha, who was shaped by pain, hurt, and regret.
Rekha’s conflict is not an isolated case. There is ample evidence to suggest that the
use of fetal tissue, as opposed to IVF-conceived embryos, for the purposes of stem cell
extraction can disturb boundaries between human/embryo and life/death (Bharadwaj
2012). For example, in her paper on her research project in the United Kingdom, Pfeiffer
(2008) argues that what made stem cell research involving fetal tissue particularly trou-
bling for women in her study was the “association with renewal, regeneration, and
immortality,” which reinstated and developed the “fetus’ physical existence and social
biography, the very thing abortion is meant to eliminate” (2008, 2544; 2009).
C O N C E P T I O N , F R U S T R AT I O N
Indeed, assisted conception is replete with death. Although worldwide the IVF industry
likes to boast of its success—with five million “miracle babies” now born around the
globe (Franklin 2012)—the truth is that millions and millions of IVF conceptions end in
“little deaths”: deaths of gametes (sperm and eggs), deaths of embryos, deaths of fetuses,
and deaths of IVF babies themselves. Even in the best IVF clinics in the world, IVF suc-
cess rates are never more than about 33 percent per cycle (Gnoth et al. 2011). But this
statistic entails a major erasure: 40 percent of IVF cycles may lead to conception in the
best clinics, but many of these conceptions do not yield “take-home” babies, whose exist-
ence remains quite elusive for the majority of infertile couples. For many infertile couples,
assisted conception is replete with loss, which must be absorbed, made sense of, ration-
alized, and grieved by infertile couples—husbands as well as wives. Although Rekha’s
story bespeaks the heartache of female infertility, men, too, may be infertile, requiring
them to face up to their own “defective sperm,” as well as to the considerable losses
encountered by them as men and potential fathers who have pinned their hopes for
offspring on the life-giving promise of assisted conception (Inhorn 2012).
Until the early 1990s, the only known solution to male infertility was sperm donation,
which, although practiced in the West (Becker 2002), is widely prohibited in most Mus-
lim-majority countries (Inhorn and Tremayne 2012). In the Muslim communities of the
Arab world and South Asia, most men refuse to consider sperm donation, equating it
with mistaken paternity, genealogical confusion, and illicit sexuality (Inhorn 2004,
2006, 2012). Similarly, legal adoption as it is practiced in the West—where a child takes
the adoptive parents’ surname, can legally inherit from them, and is treated “as if” he or
she is a biological child—is prohibited in Islam for reasons of patrilineal purity and is
rarely viewed as a tenable option among infertile Hindu couples as well (Bharadwaj
2003; Inhorn 2003). In the absence of sperm donation and child adoption, infertile men
are left with few avenues to fatherhood.
Given these prohibitions, the introduction of intracytoplasmic sperm injection (ICSI,
pronounced “ik-see”)—which was introduced in Belgium in 1991 and which overcomes
male infertility by using a man’s own sperm—was a watershed event, perhaps particularly
REDUCTION, DEMISE
It was very, very traumatic. The doctors said there could be complications with twins in
the same sac, and we definitely couldn’t keep triplets, which would be too much of a risk.
And we didn’t want to gamble. But it is traumatic. After all of the [IVF] treatment, this baby
does look . . . it’s precious, you know? I would have kept all three. That would have been
totally fine, and my husband was the same as me. But the radiologist, and the gynecologist,
and even my family doctor were all saying the same thing: “This is the best thing that you
can do, and it’s better not to get all emotional.” But we were both very emotional about it.
They did the reduction with one twin, but we lost both of them. They did the reduction on
one, but we lost both. So now we’re down to one.
Aisha added quietly, “In the end, however, it was obviously our decision. I have lots of
family there in Bombay, but I didn’t tell them. I decided to keep it quiet. They didn’t even
know about the pregnancy. I don’t think I’d be in the mood to make any small talk after
this, with people asking, ‘What did you do?’ We decided to do it quietly, so we wouldn’t
have to describe the trauma, the inertia.”
In Aisha’s story we see clearly how “beginnings” are also “endings” in the world of
assisted conception. In Aisha’s case, “too much life” has taken hold in her womb, such
that some of these lives had to be “taken” through fetal reduction. Although she stresses
her own agency in the matter (“it was obviously our decision”), Aisha’s compliance with
doctors’ demands means that she must “take lives”—lives that, to her as an infertile
woman, are particularly precious. The experience—which she recounted to the anthro-
pologist almost as a confession—leaves her doubtful and shaken. Aisha herself wanted
C O N C L U S I O N : L I T T L E D E AT H S , B I G L O S S E S
In the globalized late modernity of the new century, multiple, emergent meanings are
ascribed to life conceived and maintained through biotechnological mediation. We can
say that biotechnologies are reconceiving preconceived notions of life and death. Here
we have attempted to trace the intersections of life and death at the nexus of new millen-
nial biotechnologies. As the foregoing ethnographic vignettes have shown, in the glo-
balized, biotechnological landscape, “little” deaths can generate “big,” life-altering losses.
In producing stem cells and assisting conception, embryos are made, discarded, donated,
implanted, and lost; fetuses are gestated, miscarried, and reduced; and “take-home
babies” may or may not be brought to life through biotechnological means—and more
often not.
Although the “life-giving” qualities of therapeutic stem cells and assisted conceptive
technologies are most often valorized, our chapter has focused on the many “little deaths”
that normally elude our analytical gaze. As we have attempted to show through the sto-
ries of Rekha, Ibrahim, and Aisha, the “little deaths” of purportedly life-giving biotech-
nology may feel quite “big” to those who endure them. Through these stories, we have
tried to show how the life-and-death dialectic is not only technologically determined and
defined, but also bound up in everyday bonds of kinship, conjugality, child desire, and
the search for therapeutic resolution. It is in these everyday, affect-saturated acts of both
accommodating and resisting death that we can fleetingly glimpse the Janus-faced nature
of the biotechnologies of human life. Such technologies entail life-enabling sacrifice;
stalled births and stillbirths; the death of biogenetic tissues such as sperm; and destroyed
embryos and fetuses as “killable” bare life. As anthropology tracks these emergent mean-
ings, it becomes obvious that death, like life itself, remains emergent, context sensitive,
and ambiguous.
At a moment of twenty-first century history that holds great promise for future tech-
nological salvation, it seems quite salient to pause, to reflect, to urge caution, to critique
(Bharadwaj and Glasner 2009; Inhorn 2012). In our own ethnographic worlds in India
and the Middle East, we see the many “little deaths” that account for “big losses” in
twenty-first-century biotechnological modes of being. In the final analysis, it seems
N OT E S
1. Perhaps pregnancy loss and fetal demise are seen as exceptionally morbid topics,
because, with few exceptions (Cecil 1996; Layne 2002), they are poorly covered in the anthro-
pological literature.
2. In most Western IVF clinics, approximately half of all cases involve male infertility. In
clinics in the Middle East, the percentages are much higher, ranging from 60 to 90 percent.
Most of this male infertility is probably genetic in nature and related to high rates of consan-
guineous (cousin) marriage across the region. Indeed, in the Middle East male infertility tends
to cluster in families (Inhorn 2012; Inhorn et al. 2009).
3. Fetal reduction, along with all forms of abortion, occupies a controversial legal status in
many Muslim Middle Eastern countries, including the UAE. Thus most IVF physicians in the
UAE will not perform fetal reduction and instead send their patients outside of the country,
to India or the United Kingdom.
REFERENCES
Becker, Gay. 2000. The Elusive Embryo: How Women and Men Approach New Reproductive
Technologies. Berkeley: University of California Press.
———. 2002. “Deciding Whether to Tell Children about Donor Insemination: An Unresolved
Issue in the United States.” In Infertility around the Globe: New Thinking on Childlessness,
Gender, and Reproductive Technologies, edited by M. C. Inhorn and F. van Balen, 119–33.
Berkeley: University of California Press.
Bharadwaj, Aditya. 2002. “Conception Politics: Medical Egos, Media Spotlights, and the Con-
test over Test-tube Firsts in India.” In Infertility around the Globe: New Thinking on Childless-
ness, Gender, and Reproductive Technologies, edited by M. C. Inhorn and F. van Balen, 315–33.
Berkeley: University of California Press.
———. 2003. Why Adoption Is Not an Option in India: The Visibility of Infertility, the Secrecy
of Donor Insemination, and Other Cultural Complexities.” Social Science and Medicine
56:1867–80.
———. 2005. “Cultures of Embryonic Stem Cell Research in India.” In Crossing Borders:
Cultural, Religious and Political Differences Concerning Stem Cell Research, edited by Wolfgang
Bender, Christine Hauskeller, and Alexandra Manzei, 325–42. Münster: Agenda Verlag.
———. 2009. “Assisted Life: The Neoliberal Moral Economy of Embryonic Stem Cells in
India.” In Assisting Reproduction, Testing Genes: Global Encounters with New Biotechnologies,
edited by Daphna Birenbaum-Carmeli and Marcia C. Inhorn, 239–57. New York: Berghahn
Books.
———. 2012. “Enculturating Cells: Anthropology, Substance and Science of Stem Cells.”
Annual Review of Anthropology 41:303–17.
Vaibhav Saria
Hijras are now easily recognizable figures of what has been referenced as the third gen-
der. Over the past thirty years hijras have been studied quite intensively as legitimizing
historical forms of queerness in India and concurrently a targeted site for HIV prevention
and treatment.1 This chapter responds to Lawrence Cohen’s provocation to study the
intersection of sexuality and poverty and the ways in which each comes to invoke the
carnality of hijra bodies. More specifically, it tracks hijra aspirations toward reproduction,
the future it promises even when granted mythically, and the narratives of constant fail-
ure that accompany that aspiration. I end by discussing the resolutions that are negotiated,
which can be seen as an allegory for what is survivable.2
The ethnography that follows studies the forms of relating between hijras and their
lovers in rural Orissa and offers some thoughts on the position of the hijra in a world
that is seen to offer little by way of care or sustenance. It describes scenes from the eve-
ryday with the purpose of tracing the figure of the pregnant hijra and her baby to show
how it is invoked by the hijras either to provoke laughter in the audience that inevitably
gathers around them, or to flirt with and seduce men. The baby is also mentioned in
myths and in the narratives that hijras weave about themselves. I claim that hijras can be
understood as standing in a metonymic relationship between their local moral world,
with its imagination of a future, and their desire for sex with men.
By studying the different ways in which the baby figures in a variety of conversations,
I hope to show how the baby signals anxieties found in the reproductive futurity that
progeny offers, which hijras see as denied to them. These anxieties are inhabited not just
83
by hijras but also by men and women who were hopeful for children and would seek the
blessings of hijras to get rid of a childless existence. Hijras are invited to bless newly
married couples with fertility and bless newborn babies with good fortune, reminding
us that the child cannot be just the result of the complementarity of men and women’s
biologies but invites and needs the participation of a whole host of actors and characters.
The hijra is one such character, who is appended to reproductive futures through her
own impossible desire and relatedly through her ability to curse people with infertility or
bless them with fruition.
By evening, lots of young men would gather in my room in the bangle factory in Orissa,
tired after a long day’s work. They would lounge about, chatting, living a bit dangerously,
and would engage in prurient banter with Jaina, Azgari, and the other hijras who would
come to visit me. Jaina would inevitably get tired of the conversations that would be a
strange mash-up of religious diktats, singing, and flirting that did not result in sex, and
would start pretending she was in labor. She would untie her lungi and tie it around her
neck like women who tie their petticoats when they go bathing in public. She would then
start writhing on my straw mat, squealing loudly about the pain she was in and grab her
perfectly round belly.
The boys would be extremely amused, and soon hysterical laughing and teasing
would ensue: “Whose child is it, Jaina?” they would enquire, and Jaina would reply either
by uttering the name of some boy she had recently had sex with or by gesturing toward
one on whom she had harbored a crush for a while or, if he was absent, by saying, “The
one whose child it is knows. Why don’t you go ask him?” Azgari would often join in the
drama and begin giving advice: “Why aren’t you drinking water? The baby will come out
swimming!” or “Shall I rub soap in your vagina so that that baby slips out?” The whole
impromptu drama would end with everybody laughing hysterically.
I want to study the implications of this comic performance, because, as we shall see,
it relates to the various other ethnographic instances of conversations and discussions
about the hijra’s body and the open question as to whether a hijra could give birth to
children.
I lived behind Azgari’s bicycle shop, and I would often go there to sit and have tea.
During these times, she would often start talking loudly about how many boys came to
fuck her the previous night.3 She would usually divulge this information in the presence
of some boy she was teasing for his lust that she had satiated the previous night. Through
this form of recollection, Azgari was perhaps inviting him for another visit, but it also
might be, for her, another chance to get the fertilizing fuck that will render her pregnant.
When she was trying to seduce somebody by provoking him, she would say, “Oh, he used
to talk so big about how he would impregnate me at the first shot, fuck me till I wouldn’t
be able to take it, fuck me so hard that he would send me to the hospital, but when it
84 • VAIBHAV SARIA
came the time to do it, his cock was so small [measuring with her hand to show the
length of her middle finger].”
This scene of teasing would be repeated in the shop every day with different itera-
tions, and the boy, by this time, if he had already fucked her, would start blushing and
smiling to himself or start concentrating on his bicycle and the task of pumping air into
its tires. Usually his friends were near, and they would also tease him: “What is she say-
ing? You don’t have any power?” Size, prowess, virility, and the ability to fertilize—all
signified by a large cock. If the boy had not fucked her she would change the tense of her
statements to “Oh, he talks big . . . but I am sure his is very small, that’s why he can’t fuck
me, that’s why he doesn’t come. How will he come, sister [turning to me]? What will he
do if he comes? He is so small he can’t fuck.” The reaction of the boys usually would be
the same as it was toward their counterpart who had fucked her. The laughter was in this
case directed toward the boy who refuses to become a man and go through the rite of
passage of losing his virginity, of fucking one of these old, bawdy, pushy hijras. Usually
the luckless youth was forced by the merciless teasing of his friends to prove Azgari’s
claims wrong—by, “as luck would have it,” fucking Azgari herself.
In this drama of seduction can be detected a certain agony that lends itself to be read
as sexual pedagogy that shifts somebody’s picture and protocols of the world. I mention
seduction because I want to understand what the implications of the sexual pedagogy
proffered by the hijra are. The following is an ethnographic example that I want to study
as one instance of sexual pedagogy between the hijra and her lover.
Jaina would say,
A hijra can never set up a house with a man. He is a man, he requires children, heirs, he
requires din-duniya [a religion/world]. With a hijra, he won’t have any children, he won’t
be able to set up his duniya with her. But then, not all men are the same, very rarely, there
is one in a million who forsakes the din-duniya and the desire to have aulaad (children),
sets up house with a maichiya,4 and marries her. But then they can’t desire anything else,
they don’t think about anything and can spend their days in the manner they want. Every
man, no matter how much he loves a hijra, and no matter how long they live like husband
and wife, must leave her to set up din-duniya. Look at my case: I spent ten years with Kutty,
like husband and wife we lived. He wouldn’t eat anywhere but from my hand. The whole
world knew. But his sister’s husband came to me once, when he had gone to Balasore, and
said, “Look, Jaina, Allah and I know how pure your love is, but Kutty will need to set up
his home, settle down according to religion/law/customs of the world, he will need to worry
about children [Kutty ko ghar basana hai, din duniya basana hoga, aulad karna hoga]. If you
won’t help us in convincing him to get married he will never get married.” In the night,
his sister and mother came to me, pleading to convince him to get married. He was always
refusing to get married. So I told him, “I will live with you, I will do this whenever you want,
wherever you want, but tu ghar basa, you will have children, you need to work for your
future. What will you get staying with me? I can’t give you children or heirs. This is wrong,
what is all this?” He said, “You want me to get married, you go find a woman.” So I went
This story illustrates the agonizing quality of seduction and the antagonism inherent
in the flirting. With the invitation to participate in a carnal transaction that frees the body
from the disciplines of the moral and the social, the hijra must remind the man/boy of
the restraints and the risks he runs in renouncing the moral altogether. The hijra must
also calibrate the relationship in such a way so as to push the young lad back into the
world so that he can become the householder if he is not one already. Calibration refers
to the etiquette through which risks and freedoms can be negotiated to sustain not only
the social but also those expressions and experiences of the carnal that refuse to stick to
the social amicably. The calibration or etiquette allows carnality that might potentially
fracture the social to be absorbed while retaining its odd quality. Instances of what I am
calling calibration or etiquette can be seen in Malinowski’s Sex and Repression in Savage
Society, in which he mentions a variety of sexual taboos in the Trobriands and the varying
charges of moral shame attached to them. Although the incest between brother and
sister threatens the future held out by the social, Malinowski is still able to document an
incident in which the siblings “were able to brave it out and lived in incest for several
months till she [the sister] married and left the village” (Malinowski [1927] 2001, 82). He
cannot document any incidents of mother–son incest, but there were many instances of
breaking the exogamous rules called suvasova that resulted in shame and “eruption of
86 • VAIBHAV SARIA
boils all over the body.” Thankfully, there was magic to cure the bodily infliction, and the
shame for the woman was accompanied by admiration for the man’s plucky nature. The
case of the infraction of the incest taboo was resolved through the sister’s marriage. We
must read this primal myth of incest as one that allows for a viable socially sanctified
love. The following sections will read the myths that the hijras recite similarly—as an
allegory of which kinds of love survive and which must necessarily die.
Just as incest can be calculated very widely through rules of gotra exogamy, the sexual
act within the household must be carefully positioned within axes of kinship, genera-
tional distance, and rules of endo- or exogamy to resist incest and result in a viable child,
family, and future. The sexual act outside of the house, between the hijra and her lover
in a space that is literally a field adjoined to the house or the neighborhood and that I call
a fucking field, threatens with a formless future: they don’t desire anything else; they
don’t think about anything and can spend their days in the manner they want. The peda-
gogy of the sexual encounters in Malinowski’s analysis and in the fucking fields of the
hijras is the teaching offered to lovers of the contradiction at the heart of the social,
around which it congeals and which gives it its kinetic force.5
The primal myth of the death-dealing incest committed by a sister who falls in love
with her brother results in two sacred places in the island, one of which has springs
where lovers must bathe and the other a plant that is reputed to grow from the chests of
the dead lovers. The ritual that ensures success in love needs that plant to make a potion.
Death of the incestuous siblings makes fertile the land for all the other lovers. Incest also
explains the social etiquette of siblings in the Trobriands; if the brother and sister are
supposed to avoid inquiring about and addressing each other directly to ward off the
threat or suspicion of incest, even though they are inextricably linked with each other for
life, what is this form of etiquette supposed to do? Is this the force of the moral that
anthropologists have articulated in kinship? What are the threats that emerge from the
social that endanger it and how do the hijras domesticate them? Let us begin by studying
the etiquette, the threats it wards off, the contradictions that it hides and reveals, and
resolutions offered in the fucking fields where the hijras meet their lovers.
Statements about the baby or references to the pregnant state of the hijra did not surprise
any of us that lolled about every day; they were an established pathway of humorous
disruption of mundane everyday concerns. They were disruptive because, even when not
unintelligible, they would appear suddenly, and even though they didn’t surprise us, they
would make us laugh. Might we read the constant reappearance of this ghastly baby as a
form of repetition? If so, then we might read the flirting and fucking as sustaining for
the social body, by allowing, in Lévi-Straussian terms, the animal in the human to be
repressed and released. Or in other words, the baby and in turn the future it promises
attenuates the bestial hijra, suturing it to the social but never squaring with it.
There is always a trickster in the game, a joker in the deck to prevent the rules from becom-
ing oppression, the contest from becoming tedious or dull in losing its surprises and
enchantments. . . . Through his lies, pranks, games, and jokes, turning the world upside
down, the trickster—divine, human, or bestial—in the heavens, court, market, village, or
jungle—is the guardian of humor, prompting us to laugh at ourselves, to take nothing
seriously, to realize that profundities are but vain inventions of desperate intelligence. He
exists in order to remind us of the game, that the game is all. (292)
The trick that Jaina and Shamsheri played on the blind maulvi was perhaps an instance of
turning the world upside down and a way of negotiating the chafing social. The bestial hijra
reminds her lover that the world, the family, and the household are all a game, but neverthe-
less a game that he must necessarily play, and the fucking is a constant reminder that the
rules of the game are never in one’s favor, that the carnal even though mediated through
the social will never sit with it comfortably. The stakes of coming to endure the social, hijras
remind us, are mortal: at its heart it exacts a cost that cannot be survived intact.
Hijras’ babies did not always cause amusement and humor. When one’s audience is
not the young men with whom one is flirting or in love, or when the scene is not that of
seduction, the story often turns wistful. Akhtari, another hijra in Bhadrak, told me this
story on a hot afternoon when she was uncharacteristically despondent.
At Chisti’s dargah6 in Ajmer, there lives a sada suhaagan (one whose husband is always
alive/always married/never a widow). She is a hijra. She is not actually married to a man
or the baba but she dresses that way, her hands are full of bangles and her body covered in
beautiful gold jewelry. A person has to go and plead to her and say, “Suhaagan, we don’t
have a child, please ask the khwaja to bless us with a girl or boy, whichever they want.” If
somebody wants a child they have to go to the dargah, the khazim over there will direct
them to the suhaagan. Then the suhaagan will start pleading to Allah, “Ya allah, look, this
woman has come, asking for a child. It’s been so long since she’s married, why haven’t you
given her a child?” She will become very passionate in her pleadings. She is very beautiful,
88 • VAIBHAV SARIA
more beautiful than women. She will not leave till it becomes Allah’s wish to give the
woman a child. She will remove her jewelry and break her bangles in josh, asking Allah,
“Tell me, are you going to give a child or not?” Finally, Allah will change his mind and say,
“Go, girl, go home. In nine months you will have a child in your lap.” After Ramzan, dur-
ing Eid, the first shroud at the khwaja saheb has to come from a hijra, a maichhiya, otherwise
the stove will not catch fire, nobody will be able to make the wood burn, for the feast. Nobody
else is supposed to put the first shroud besides a hijra. There was a maichiya that used to
live with Chisti, she was well versed in the Quran, so her name was Hafiz Jamal, but she
was a hijra. She had started talking to a rich man’s son, and soon they became lovers. They
both were very beautiful. Soon, people got to know that they were in love. The villagers
went to the seth: “Your boy is roaming around with a hijra, aren’t you scared he will become
spoiled?” The man went to his son and asked why he was roaming around with the hijra.
The son replied, because he loved her, why are you displeased with this? “No, people are
starting to talk, you are my son and she is a hijra, she is not a woman. What can she give
you [Tumhara usse kya kuch hoga]?” The son replied, “But she is also a beloved by khwaja
sahib like all of us.” The boy and the hijra both went to the khwaja and told him, “This is a
seth’s son and I am a hijra. You know everything about me. Do one thing: give me a child
of my lover in my stomach, that looks exactly like my lover, and as soon as I give birth kill
me.”7 After a few days, she was pregnant. They went to the doctor, who was so surprised.
He took the baby out through an operation. After the child was born the word had to be
kept that she had to die. But as she has asked, the world knew that a hijra had given birth
to a child. The child died as well with the mother. But the whole world knew that her love
was true because khwaja saheb had given her a child. Her mazhar (shrine) is still there, and
it is written, “Hafiz Jamal Bibi,” now that she had become a mother.
There are many different versions of this story. The other version, recounted by Gay-
atri Reddy in her ethnography, goes as follows: “There was once a hijra named Tarabai
who desperately wanted children of her own. So she went to Ajmer Baba and asked for
this wish to be granted. Only, she said, ‘I want a child to be produced in my womb,’ and
did not explicitly ask for it to be born. So her pregnancy continued for several months
and finally, unable to bear the pain and burden any longer, Tarabai slit her stomach and
removed the baby, killing herself and the baby. But to this day, hijras who go to Ajmer
Baba’s dargah inevitably pay homage to Tarabai as well” (2005b, 134–35).
In Ajmer, in North India, there is a holy place that belongs to the hijras. It is called Baba
Darga, and it is on top of a hill. One time, during Urs, many people were going up the hill
to pay respects to Baba. One hijra was also there. She saw a lady with four children and
offered to carry one or two of them. The lady became very angry and told the hijra, “You
are a hijra, so don’t touch my children.” This made the hijra feel very sad, so she asked
Baba for his blessings for a child of her own. But she only asked for a child and didn’t ask
Baba to bring the child out. The pregnancy went on for ten months, and her stomach
became very bloated. She went to the doctors but they didn’t want to perform an operation
[cesarean section] on her. Eventually she couldn’t stand the weight any longer so she prayed
to the Baba to redeem her from this situation. But Baba could only grant her the boon, he
could not reverse it. When the hijra felt she could stand it no more, she found a sword at
the darga [sic] and slit herself open. She removed the child and placed it on the ground.
The child died and the hijra also died. Now at this darga prayers are performed to this hijra
and the child and then to the Baba. (Nanda 1999, 19)
And in yet another widely circulated version—one that you will never hear from the
hijras—the khwaja saheb was mocked by a hijra who said that he was no saint and could
perform no miracles, challenging him that if he could perform miracles he should be
able to make her pregnant. The hijra got pregnant but could not give birth since she had
no vagina, so she prayed to khwaja to relieve her and asked for his forgiveness. The
khwaja could not take the child back so she died along with the baby in her, but since then
the hijras have flocked every year to pray and ask for the khwaja’s blessing. The Chisti
dargah is not the only one associated with myths or legends of saints and their ability to
bestow fertility on hijras. I was told a similar story of the saint Ganj Rawan Ganj Baksh,
whose shrine is near Aurangabad. His powers to bestow fertility were mocked by a hijra
as well, who then found herself pregnant, and, as the story goes, she gave birth, but both
she and the baby died at childbirth. As in Ajmer, the tombs of the hijra and the baby are
near the shrine, and the fruits of the trees of this shrine are supposed to make an infertile
woman pregnant. Similar to the workings of the primal myth of incest in Malinowski
that becomes the basis of socially sanctified love, the one that renews the social, the dead
hijra and her baby offer a resolution when the social threatens with death in the form of
infertility—a resolution riddled with pathos because it is also an allegory of what is sur-
vivable.
Each version, differing ever so slightly, was told to make a point to the anthropologist.
For Malinowski, the slight variations point to a complete cultural formulation, or “pic-
ture”; for example, Reddy’s informants told her the story to make comprehensible to her
that hijras were different from women. Reddy (2005b) analyzes the story to ask, “Are
hijras primary agents of gender subversion in the Indian cultural context, or are they
uncritically reinscribing gendered categories through their desires and practices?” and
90 • VAIBHAV SARIA
concludes that hijras’ “gender performances instantiate their ‘inherently ambiguous’ and
axial position in the Indian imaginary” (135–36). Though a great deal of scholarship
reiterates the point about the “ambiguous nature” of hijras, and some scholars do it with
good intentions, the formulations end up with the categories of resistance, subversion,
and resignification of the already given to forefront the normative in Indian sexualities.
But let us instead make a different move and locate the hijra within the larger Indic
imaginary and ask how, in Akhtari’s story, religious idioms and myth make comprehen-
sible the topography of desiring men. Then the story reveals the pathos in such desires
that can never achieve currency. In Georg Simmel’s words, desires that cannot twist
themselves into a price and hence acquirement, exchange, and possession and can lead
the desiring subject only to her death, as shown in the stories above—but deaths from
which the social sustains itself and ensures fertility and futurity (1984, 134).
While Reddy’s analysis is precise and helps us realize that the hijra has placed herself
outside the complementarity of the male/female, we will need to place it next to Nanda’s
conclusion, which focuses instead on the register of asceticism in the hijra. Then the
hijra appears not only outside the male–female binary but also outside the project of the
family and its various economies and moral constraints. Nanda writes of the story, “On
the one hand it [the myth] expresses the wish of some hijras to have a child, and yet on
the other hand acknowledges its impossibility. The death of the hijra and the child sug-
gests that hijras cannot become women—in the most fundamental sense of being able
to bear a child” (1999, 19). But one may yet ask, How can one respond to impossible
desires and longings? The impossibility of a desire that does not cool down no matter
how crippling the discouraging evidence, and tugs at the carnal to seek comfort, solace,
or release, makes a claim of a different sort on the subject and on the anthropologist.
CONTIGUITIES
Let me now return to the story and draw out two sets of concerns, the first being the
contiguity between God, the khwaja, the hijra or the sadaa suhaagan, and the couple that
wants a child. The asceticism of the khwaja and the asceticism of the hijra in Ajmer come
together here to bestow the infertile couple with a baby, whereas the fruits from the trees
growing near the grave of the pregnant hijra in the mazhar of Aurangabad are supposed
to grant fertility to an infertile woman. Lives and families are lived in the wake of the dead
hijras and their babies, and the wood in their stoves will burn only after the hijras have
given their shroud to the khwaja. The form of exhortations of the hijra from the khwaja
are telling; they can also be read as flirtatious—sweetly coercing the god to bless the
infertile couple with a child. The khwaja is similar to the hijra to the extent that his desires
are focused toward god and consequently he steps out from the domestic economy as
well, resulting in a different set of obligations. In the story Akhtari told me, the miracle-
giving powers of the khwaja are relied upon to bring meaning to the claims of love that
the hijra feels toward her man. When the father interrupts the love affair by saying that
92 • VAIBHAV SARIA
The liar’s face (he who accuses) has been blackened and the lover’s statement
has been proven true.
Because the doubt has vanished and doubtlessness is established, therefore I,
devoid of qualities, dance.8
(135)
The contiguity between the Khwaja and the hijra, who both meet at the point of the
sadaa suhaagan, would explain why so many men would come to Jaina and ask her to
breathe on a small vessel of water after reading the Quran. Upon inquiring, Jaina would
say, “His wife is pregnant, and ill, so that her health and the baby’s health is not harmed
and to ensure everything happens smoothly, they will take the water and cook their din-
ner with it.” Apart from having the power of barakat, Jaina made her living by making
garlands of flowers, and only her garlands were allowed in the mazhar. The Khwaja and
the hijra both in their turning away from the world into a formless future, which some
would call liberation, point out the inevitable failure of the social in organizing bodies,
anatomies, and least of all the carnal. The tomb of the khwaja as well as the fruit and
leaves growing out of the carcasses of the hijra and out of Malinowski’s sibling lovers
make fertile grounds for the social to sustain itself. The sexual pedagogy makes apparent
the uncertainty of the world, the contradictions that the social harbors within it, and
makes apparent that the alternative to this meaning- and value-giving game is a formless
future, which for the khwaja is liberation and consummation with god. The hijra finds
her liberation in fucking, in consummating with everybody who might be seduced.
The second concern is the men’s obsession with the hijra’s reproductive capabilities.
Whenever Lovely, that beautiful hijra, would come to Jaina’s flower shop in Bhadrak
while she was waiting for her train to Jaipur, she would create a hungama (pandemo-
nium) with her spangly sari revealing her breasts and the inviting sway of her hips with
which she used to walk. The men would smile and stare, with desire dripping from their
eyes. Jaina would not help matters by screaming loudly throughout the market to Love-
ly’s embarrassed amusement, “Come, somebody, buy her for tonight. Seven hundred
rupees for one night.” The men would not ask Lovely directly but would come to Jaina.
The barber who regularly gave me a shave would ask her, “Can she give birth? Can she
get pregnant [baccha kar sakti hai kya]?” Whenever a particularly feminine, young, wom-
anlike hijra would appear in the public places, the boys would embark upon a long con-
versation with hijras they did know very well, discussing whether the beautiful hijra had
got herself operated, whether that operation also meant that she could now give babies,
and how that was possible. I find both the men’s inquiries and the hijras’ answers very
interesting. The fact that the question was asked would allow the hijra to say, “Yes, of
course she can, the doctors in Calcutta, Delhi, Bombay can do all this now.” If Jaina were
asked this question then, depending on her mood, the hijras would sometimes be able
to give birth. When Jaina was flirty and not tired (“Of course she can, why don’t you try?
Come tonight, you can see for yourself”). But when she was cross and sleepy the answer
94 • VAIBHAV SARIA
vs: You’ve fucked him and his grandson?
j: I’ve fucked his younger brother, both his sons, and two of his grandsons.
Not what I had in mind when I came collecting narratives of love affairs, I was a bit
gobsmacked by this largesse that didn’t pay any heed to laws of incest. When I finally
undertook the daunting task of drawing kinship charts, I discovered Jaina, Shamsheri,
Azgari, Akhar, Mehraaj, and Mangu had between them fucked generations of men.
Perhaps this might be the sweet sad resolution of repeated failures of fertility,
repeated attempts that fuel the play between failure and hope, animal and human, nature
and culture, the social and its carnality through sons and grandsons—an allegory of
survivability.
The laughter is important. It makes lives in Bhadrak, one of the poorest districts in India,
bearable; it is a transaction of sukh dukh (sadness and joy). Once, when a child not yet in
his teens was staring at Jaina’s breasts with a lot of hunger, she picked up her lungi and
flashed the seductive darkness of the region between her legs and screamed, “Come
fuck me.” I started laughing uncontrollably, but Amrita, the NGO tranny, told me not to
encourage Jaina.9 Later I asked Jaina, Akhtari, and Shamsheri, “Why do you always talk
like that? Why do you do that?” Jaina said, “I try to make everybody laugh, even you, who
have come so far away from your mulk [land]. You must feel strange here. . . . By laughing,
the heart becomes light. These men they come to me to talk, they share their sukh dukh
and their problems and I try to make them laugh and make their ji halka (lighten the
heart/chest/soul).” Ji Ghabrana is when the heart beats fast because anxiety and worry
have gripped it in the face of some problem that one cannot surmount, and in Bhadrak
there were problems aplenty, the external conditions of structural poverty manifest in all
their guises, consequences, and effects. Men were forever signaling Jaina and the others
to come aside, and when asked about the animated, surreptitious conversation, Jaina
would tell me (in confidence, of course) what the man said about the problems he was
facing.
Laughter (or hasya one of the sthayibhava of srngara) that made the ji halka, was a form
of care that the hijras offered, the references to the baby and the fucking would arouse
the men—and would reveal the pleasure of desiring and result in the pleasure of being
desired in men that were scarcely desired in the world next door. It is this form of shar-
ing, sukh dukh and making the ji halka to allow the burden of life to be borne by beautiful
men that would result sometimes in love. Love, manifested through the feeling of being
pregnant—of carrying its moral witness, the baby. The baby that would transform by its
very existence, and likeness, dead or alive, the hijra into an appropriate object of desire—
a woman. Hijras through their theatricality inherit a form of aesthetics that can be read
T H E P R E S E RV E R
What form of caring is done by the sharing of sukh dukh (happiness and sadness) and by
associating the laughter and the fucking? It is not the economy of creation and destruction
but I would argue the actions of preservation, of sustaining and sustenance. Looking at
the care afforded by the erotic relationships of hijras through the eyes of preservation or,
more accurately, of sustenance would then allow the hijra to enter the economy of
life diagonally. She is bent, or banka. Rasa preserves us from the despair of this transient
world, it is what triangulates and makes possible the economy of creation and destruction.
It is also the form of care taken up by the sadaa suhaagan who implores passionately for
a child to be given to the barren woman. The sadaa suhaagan cannot produce children and
the family, and like Jaina, she doesn’t destroy the possibility of the householder
in men. This form of care sends the lover to his wife, asks Allah to give the child to the
woman, blesses the child and the woman with prosperity, fertility, and fortune so as to
make her life bearable in the world, while directly opting out from these projects at the
same time. The care that makes the ji halka, cannot remove or solve the problems of the
world, but it fortifies its inhabitants to bear its knocks once again. The men would speak
of the carnality of the fucking in explicitly constitutional ways: “There was so much heat
built up in my body, kaam karne ke baad [doing work/fucking] the body has turned calm”—
the anxieties of the world, the heat generated through desire, all of this calmed by the
fucking.
The sharing of the sukh dukh allows her to partake in the world in a certain way. This
is what qualifies her renunciation, her diagonal entrance into the economy; she is not
inside or outside of the home and world but lives beside it. This also explains the laugh-
ter, the irony. In his study of the laughter of Krishna, an avatar of Vishnu, the preserver,
Siegel writes, “Within the history of religion of Krsna there has been a dialectic at work
between the theologian and the comedian, one that balances the god and creates an
invigorating tension. The theologian, stressing the absolute divinity of Krishna, makes
the god serious; the comedian emphasizing the absolute humanness of Krsna, makes
the cowherd funny. The more divinely serious he becomes, however, the greater his
potential for comedy, for comic revelations of his humanness; conversely the more comic
he is, the greater his appeal, the greater his potential for being taken seriously. Comedy
vitalizes, then, the very devotion of which it makes fun. It preserves what it seems to
destroy” (1987, 370). The rectum then might be the grave, but the semen it ingests is an
accursed share and its death inevitable.
The plenitude celebrated by the hijra in the form of blessing other people’s babies and
marriages, through which they earn their living and materially sustain their existence, is
96 • VAIBHAV SARIA
related to the laughter and fucking through the myth retold by Akhtari. She reads a myth
of fertility bestowing fruits and shrines as one emerging from a love story failed by the
world, the connection is offered through rasa. The granting of fertility and the sexual
pedagogy that the hijra instantiates alleviates the cruelties of the world and the domestic
that result in ji ghabrana. Siegel wrote of laughter, “Comedy can be refuge, if not redemp-
tion; its laughter can be solace, if not release.” The fucking can offer respite while run-
ning the risk of rendering one a hijra ascetic as well, but there is a limit to this relief,
though, and it comes in the figure of the fetuses that the hijras imagine and claim to have
had fertilized in their wombs. While desires might be resolved through the lover’s son
and grandson as she is impregnated every evening, the hijra’s repeated forms of love, in
their ceaseless waves, can result in a very melancholic experience of temporality with no
liberation in sight. But at least there is the laughter and the fucking.
NOTES
1. See Reddy 2005a for the deployment of hijras in this double-pronged set of discourses:
Interestingly, it is perhaps for the first time in hijra history that they are not perceived globally as
sexual (rather than asexual) figured, as metonymic figures of “sexual difference” in compendia of
Lesbian, Gay, Bisexual and Transgendered (LGBT) studies on the one hand, and as an integral part of
the MSM [men having sex with men] or kothi sexual culture on the other. While hijras might have
thought themselves a part of this wider kothi universe and engaged in practices considered “homo-
sexual” for years it appears to be only recently that their sexual practices have become commodified
and that they are now primarily perceived as “sex workers.” (263)
2. See Cohen 1995, in which he writes: “[E]conomic marginality is not irrelevant to the
construction of sexual difference and sexual desire—without reducing desire and difference
to utilitarian schemas and without erasing the pleasures of inalienable difference. My sugges-
tion is that sexual difference is experienced and enacted through other forms of hierarchical
social difference, that it gives meaning to and takes meaning from other hierarchies; patriar-
chal, racial, economic, generational, national, and so forth” (295).
3. I use fuck throughout the article not only to remain close to the word most used, chodhna,
by my friends in Bhadrak but also because I would like my exercise in writing about sex to be
taken in an enthusiastic sympathy with Mark Doty. Doty (2010) writes, in his short story “The
Unwriteable,”
I have the language of pornography, I have the language of anatomy or medicine, I have the language
of euphemism and I’m happy with none of them. In Nick Flynn’s memoir Another Bullshit Night in
Suck City there’s a list, maybe two or three hundred terms, for being drunk. I could make a list like
that for fucking and come absolutely no closer to what I want to say; it is as if the transformative bod-
ily experience lives on one side of the veil and language on the other. What can I say? I fucked him,
he fucked me, and then we’d go out and get something to eat and then we’d go back and pick up where
we left off. Wild nights, wild nights!—pressurized to diamond-light by secrecy for nearly three years.
We never spoke of them to anyone, not a single word.
4. Maichiya is the Odia word for “hijra” and is used interchangeably in this paper, as it was
in my conversations in Orissa.
9. The term NGO tranny refers to a transsexual or a transgendered person who is usually
from the cities and works in NGOs that constitute the network of AIDS cosmopolitanism that
depend on imparting public health wisdom to Female Commercial Sex Workers, Hijras,
Kothis, Active and Passive Men who have Sex with Men. They are a conduit and travel to and
fro between the local sites where the infection takes place and conferences across the world
where global speak about health and wisdom take place and to which they are invited so as to
gain legitimacy for their concerns. Some don’t identify as hijras because of their class and
caste differentials whereas some hijras on the other hand are invited precisely because of these
differences that legitimize their role as local experts.
98 • VAIBHAV SARIA
REFERENCES
Cohen, Lawrence. 1995. “The Pleasures of Castration: The Postoperative Status of Hijras,
Jankhas and Academics.” In Sexual Nature, Sexual Culture, edited by Paul R. Abramson
and Steven D. Pinkerton, 276–304. Chicago: University of Chicago Press.
Doniger, Wendy. 1995. “Begetting on Margin: Adultery and Surrogate Pseudomarriage in
Hinduism.” In From the Margins of Hindu Marriage, edited by Lindsey Harlan and Paul B.
Courtright, 160–83. Oxford: Oxford University Press.
Doty, Mark. 2010. “The Unwriteable.” Granta 110 (2010): 7–24.
Elias, Jamal. 1998. Death before Dying: The Sufi Poems of Sultan Bahu. Berkeley and Los Ange-
les: University of California Press.
Hanif, N. 2000. Biographical Encyclopaedia of Sufis—South Asia. New Delhi: Sarup and Sons.
Malinowski, Bronislaw. (1927) 2001. Sex and Repression in Savage Society. London and New
York: Routledge.
Nanda, Serena. 1999. The Hijras of India: Neither Man nor Woman. Belmont, CA: Wadsworth
Publishing Company.
Reddy, Gayatri. 2005a. “Geographies of Contagion: Hijras, Kothis, and the Politics of Sexual
Marginality in Hyderabad.” Anthropology and Medicine 12, no. 3 (December): 255–70.
———. 2005b. With Respect to Sex: Negotiating Hijra Identity in South India. Chicago: Univer-
sity of Chicago Press.
Siegel, Lee. 1987. Laughing Matters: Comic Tradition in India. Chicago: University of Chicago
Press.
Simmel, Georg. 1984. Georg Simmel: On Women, Sexuality, and Love. Translated by Guy Oakes.
New Haven, CT, and London: Yale University Press, 1984.
It was in the context of a media scandal that I was able to visit for the first time the dead
archive of the local DIF (Sistema para el Desarrollo Integral de la Familia [System for
Integral Family Development]), in central Mexico, where I was carrying out research on
adoption.1 The DIF is the government office charged with coordinating and implement-
ing adoptions and other social-assistance policies in Mexico. The media scandal involved
the case of a poor indigenous mother who had accused the DIF of unlawfully giving her
children up for adoption a year earlier. In response, local NGOs and opposition-party
members were demanding an immediate review of all adoption cases administered by
the state government.2
The imperative to open the dead archive reached new levels when newspapers
reported three months later that information about the total number of adoptions carried
out since 2000 did not exist. Indeed, according to the written response one DIF worker
gave to the NGO inquiring about the scandal, the dead archive “was lost.” In reply, the
DIF’s director told the press that there were no lost files, that what happened was merely
a wrong response on the part of the worker, and then went on to praise the work of the
previous governor. He promised that a precise review of the files would be made to make
the information transparent to the public, with punctuality and objectivity.
When the news broke, I had been conducting fieldwork in the DIF’s Adoption Depart-
ment for a year. Although DIF authorities knew of my intentions to write a dissertation
on adoptions, I was absorbed into the DIF’s bureaucratic structure in a rank similar to
that of a professional trainee, like other students carrying out the social service that is
10 0
required by the Mexican educational system. Specifically, I worked as a trainee to the
female social workers, secretary, psychologist, and lawyers in the Adoption Department,
which is formally part of the DIF’s legal arm—the PDMF (Procuraduría de la Defensa
del Menor y la Familia [Office for the Defense of the Minor and the Family]). The head
of the Adoption Department, the only male in the office, was our immediate jefe, or boss.
We usually called him licenciado, alluding to the fact that he had a licenciatura degree as
a lawyer and was our superior. As soon as the media scandal unfolded, the licenciado
received a “higher order”: Numbers about all adoptions since 2000 had to be created,
and a complete legal adoption file needed to be presented to back up each number. Those
adoptions with no complete file or judicial ruling could not be counted or registered in
the official list. Yet there was no record of the dead archive files anywhere, and no way to
know what information it contained.
A lawyer by profession, the licenciado was well aware of the dangers that conjuring up
these not-so-dead documents posed to the state government. As he said to me: “To dig
up all this information is a double-edged sword. It could bring us a lot of trouble in the
future.” He feared the powers in the old files—their capacity to come back to life and
haunt the state authorities for their own nonconformance to law—and was nervous
about making an adoption list with information that could be traced in the future. Who
knew what sorts of secrets these documents contained and how they might further dam-
age the legitimacy of the DIF? The more these legal documents were to be scrutinized
outside of their regular bureaucratic path, outside of the context that legitimated them in
the first place, the more they could “put to death the very thing [. . .] which carries the law
in its tradition” (Derrida 1998, 79; emphasis in original). The dead files held within them
the power to expose the fragilities and arbitrariness of the state’s legal work.
In part, the licenciado knew that his superiors would have preferred the archive to be
really dead, forgotten, and concealed, with all its secrets and heterogeneity buried forever.
But he also knew that there was no other site through which the state could try to restore
its credibility as a “rightful” holder of legality and the past. As Max Weber (1978, 957)
famously noted, bureaucratic authority is based upon written documents. The compila-
tion of documents and the repetitions of filing were what supported the conditions of
possibility for governmental authority (Feldman 2008). For the licenciado it was also a
matter of pleasing his superiors, and thus of keeping his job and possibly even rising
within the DIF’s bureaucracy. As such, it became clear to me how adoption files, in their
greater or lesser capacity to fulfill the legal requirements of Mexican civil law, carry a
double—and unevenly felt—threat: they are threatening to birth families and parents
such as the women of the media scandal, who can be separated from their children
definitively with such rulings; and they also pose a threat to the state government itself
(Hull 2003; 2012a), as documents that can expose an arbitrary use of the law. The spec-
tral structure of the archive and its documents (Derrida 1998), articulated in the demand
of remaining dead and alive at the same time, is precisely what makes it both a source of
danger and a hope for future justice.
A N I N T E G R A L FA M I LY D E V E L O P M E N T
The promotion of adoption as the best alternative for poor institutionalized children
whose birth relatives are deemed unfit to raise them is part of a broader shift in govern-
mental approaches to the family in Mexico. With the state’s adherence to international
adoption conventions in the late 1980s and 1990s,3 and political shifts toward the right
in the PAN governments of Vicente Fox (2000–2006) and Felipe Calderon (2006–12),
as well as with the newly elected PRI government in 2012, the adoption of children has
gained unprecedented attention as a means to both protect the rights of children and
promote the importance of the nuclear family in the creation of citizens. In the 1990s,
Mexican federal and state governments began to adjust existing codes to facilitate the
“plenary” adoption (adopción plena) of vulnerable children. These newer reforms—which
follow Euro-American understandings of adoption—define adoption as the juridical
institution that allows children or disabled persons to become part of a new family as if
they were biological offspring. As such, adoption has become, for the first time in Mexico,
configured as an irrevocable status that extinguishes all previous kinship ties of the
adoptee. The new laws stand in stark contrast to earlier, “simple” adoption provisions—
derogated from the federal civil code only in 2013—in which adoption was defined as a
contractual relationship between the adopter and the adoptee. This relationship did not
sever bonds with the birth family and could be dissolved by such things as the ungrateful-
ness of the adoptee. These reforms have in turn opened up new spaces from which the
state can regulate the formation and dissolution of families.
Following the guidelines of a new Social Assistance Law passed in 2004, the DIF is
now in charge of coordinating all public and private social-assistance institutions in
Mexico. As a decentralized public institution with its own patrimony and juridical per-
sonality, the DIF has been a central governmental apparatus in making the family the
privileged unit through which “vulnerable” individuals can receive social welfare. In the
The meeting, held in the children’s toy library, started half an hour late, at 10:30 a.m.
Except for the main lawyer who directed the event, there were only women in the room
that morning. Sitting around adjoined red children’s tables were the albergue’s director,
psychologists, therapists, lawyers, social workers, and a doctor. Counting me, there were
twelve of us in all. Thirty-five cases—which included groups of siblings—were going to
be discussed that day.
In Mexico, the majority of children enter state albergues as part of a judicial investiga-
tion ordered by the Ministry of the Public Prosecutor (Ministerio Público). That is, chil-
dren are placed under the “temporary” care of a state institution while a crime—such as
child neglect, rape, sexual abuse, or family violence—is being investigated. Albergue
meetings, such as the one I attended, are occasions in which DIF staff assess each child’s
legal situation and monitor the status of the reports and investigations that are necessary
to resolve their individual legal cases. This means, in part, deciding whether children will
be sent to another, usually private, long-term orphanage; will be reintegrated with suit-
able family members; or can become candidates for adoption. Yet, to achieve an outcome
that complies with the legal requirement to safeguard the “superior interest of each
child,” careful techniques of timing and pacing must be observed in the production of
the documents that will serve as legal proof.
T H E A D O P T I O N C O U N C I L’ S M E E T I N G
In this case, who abandoned them is the mother, a young woman, twenty-two years old. [. . .]
She does not have a stable life. She likes to go out to bars, drink alcoholic beverages, and she
only returns home like around five in the morning. She did not legally register the children,
either. The one that placed the complaint is the alleged person who took care of the children
After listening to the lawyer and asking some questions, the procuradora asked what
was known about the children’s father. The lawyer replied promptly: “This is precisely a
situation where the alleged father is married. And he wants to have both the señora in
one bedroom and his wife in another. . . . So we agreed with the mother that she should
declare that it is her will to give up the children for adoption, to avoid all the cumbersome
legal paperwork involved in retrieving her parental rights.” The head attorney added
quickly: “Well, in this case the children are not registered as her own. . . . Look, you know
what happens? Sometimes because we try to sensitize [these people], a lot of time is
lost. . . . Well, what I mean is that those of us who are mothers are always looking after
our children. . . . You see, if one of my children got lost, in five minutes I would already
be crazy!” The head of the Adoption Department interrupted: “I have dealt with those
cases, too, trying to [convince mothers to] do a voluntary surrender of the child, but [later]
they repent, they say we are dealing arbitrarily with their children, that their children are
fine with them.”
The procuradora replied:
Those cases are typical . . . but if we say, “Let’s give the mother another chance,” in two
years—if we are still working here—we will see each other again and it’s going to be the
same story: the children will be older, and the mother never came, and all that because we
paid attention to her [por estarle haciendo caso]! Hey, she already committed a crime, she
entrusted her children to others [los encargaba], she abandoned them, she went out to par-
ties and didn’t give a damn about her kids [y le valían gorro sus hijos], and we are still trying
to make her understand? . . . If the children have no birth certificate and we registered
them [as expósitos], at this point there is no [legal] kinship tie with her. What will happen
now? Well, we will give them in adoption!
That day the council members unanimously voted that the siblings should be placed
in an adoptive family. Yet the exchanges leading to the final vote did not figure in the
official proceedings, which consisted of the same copied-and-pasted information that was
written down in the children’s adoption file—the one that would be sent to the superior
court for judicial approval. In anticipation of “future moments in which documents will
be received, circulated, instrumentalized, and taken apart” (Riles 2006, 18), the final
version supported the image of an absent mother not available for her children. The
knowledge about the siblings’ birth mother had to be managed, limiting the document’s
contents to repetitive words. This move was also closely aligned with the need to produce
“auditable” documents.
In general, mentioning birth relatives was avoided as much as possible, and when that
was not possible, the word for “alleged,”—presunta—was included before the kinship
FINAL REMARKS
I started this paper with a media adoption scandal in which a birth mother’s story threat-
ened the legitimacy of the state institution charged with regulating adoptions and forced
it to review its own “dead” archives. Later I moved to the DIF workers’ daily attempts at
managing both the content of files and the form in which this content is presented, in
order to focus on the materiality and work that go into producing an archive. By looking
at the early stages of the elaboration of documents that serve as proofs in legal adoption
files, my intention has been to focus on the movements and procedures (Das 2004; Poole
2004) by which the legal object of the parentless child is produced.
In this task, my work draws on the growing literature on bureaucracy and documents
(Feldman 2008; Ferguson 1990; Gupta 2012; Herzfeld 1992; Hull 2012b; Riles 2006;
Verdery 1996), which has focused on the everyday workings of the state and the produc-
tion of knowledge in its material formation (Hoag 2011, 81). Contrary to Weber’s ideal
image of bureaucracy as a machinelike entity that should be characterized by “precision,
speed, unambiguity, knowledge of the files, continuity, discretion, unity, strict subordina-
tion” (1978, 973), scholars have shown how government workers not only follow rules
blindly and carry out decisions in a mechanical fashion but also engage in practical forms
NOTES
1. Common parlance in Mexico refers to files that are no longer in use and have been stored
indefinitely as constituting a dead archive, or archivo muerto.
2. In accordance with the state’s gendered imagination of its own division of labor, it is
always the duty of the “first ladies” to head the DIF at the municipal, state, and federal levels.
As such, the gendered and hierarchized organization of social assistance in the country, which
REFERENCES
Eleana Kim
“Let’s throw off the disgrace of being the ‘orphan exporting country’!! Oppose overseas
adoption. Our babies [raised with] our own hands!” I signed the petition and tied a colored
bandana around my neck in a show of solidarity with the Korean birth mothers and
transnational Korean adoptees who had gathered for this demonstration. We were at a
subway station in central Seoul, South Korea, to protest the system of overseas adoption,
which had been ongoing since 1953. That the women had filtered a discourse of reproduc-
tive rights through nationalist slogans was an intriguing and evocative strategy. These
women, in their forties and fifties, had sent children overseas in the 1970s and ‘80s,
during the largest wave of South Korean adoptions, and their phrases resonated with the
political discourses from those decades, when adoptions first became associated with
national shame and then became a harsh blight on the nation’s international reputation
as an economic miracle and development success story.
It was August 2007, during the fourth international Gathering of Korean Adoptees,
which brought roughly five hundred adult adoptees from fifteen different nations in
North America, Western Europe, and Oceania to Seoul. During the various workshops
and breakout sessions, activist adoptees canvassed other participants to support this
demonstration planned by a newly formed group of activist birth mothers known as
Mindeollae (“Dandelions”). These middle-aged and older women had met each other
through the work of an adoptee filmmaker who had been interviewing women who had
sent children overseas for adoption. As they shared their stories of regret, sadness, and
injustice, they gained confidence in telling their stories publicly, and began to mobilize
114
so that young women today would not have to suffer the same emotional and psycho-
logical traumas they continued to endure.
I arrived at the protest with a group of adoptees, following a workshop that examined
the political economy of international adoption. We had left one person behind, however:
a recent college graduate named Ben, whose Korean birth mother was a main organizer
of the event. Before we departed the workshop location, I lingered to ask Ben whether he
would join us, but he was seemingly unable to move down the hallway through which
the rest had departed. When I asked him whether he would come, he said that, as much
as he wanted to support his birth mother, he felt that it would be “negating [his] own
existence” to attend an “anti-adoption rally.” His literal paralysis emerged from his simul-
taneous sense of kinship obligation to support his Korean mother and a profound sense
of existential risk. Ben eventually came to the protest site to greet his birth mother, but
he didn’t wear a bandana or brandish a sandwich board with a slogan such as “Korean
babies not for export” or “End Korean adoption,” as did the other adoptees. He came only
to greet his mother and to be introduced to her friends, and left soon afterward.
I was struck by Ben’s statement, and the powerful sentiments that informed it. Why
was being “anti-adoption” so threatening to his very sense of self? How can problematiz-
ing adoption entail such existential risks? These sentiments are not unique to Ben, and,
indeed, some adoptees might have diagnosed Ben as needing to liberate himself from
false consciousness regarding adoption as an unproblematically ethical and moral prac-
tice. Indeed, the most politically active adoptees I knew agreed that a process of “separat-
ing” adoption as a political and economic system from the “personal or emotional expe-
rience” of kinship was a necessary step. Adoptees had to confront the fact that their
political opposition to adoption as a stratified, raced, and gendered system would be an
affront to their adoptive parents or interpreted as a rejection of the relatively privileged
life they had led in their Western, middle-class families. Amy, a Korean-American adop-
tee activist, argued that the inability to “separate” was the reason that “[adoptee] groups
fall apart when they get political. . . . People sometimes have almost a violent reaction to
some of the stuff that’s going on with us [activist adoptees] because it’s really hard for
them—for us also—to separate the emotional from what we think is political.”
This separation of the emotional from the political, however, is precisely what was
repaired at the site of the rally. Adoptees and birth mothers interacted as if they were
related, with the older women and adoptees creating bonds of solidarity and kinship
through mutual recognition of their respective losses. Their solidarity was premised on
a sense of shared victimhood at the hands of the indifferent and misogynistic South
Korean state, which privileged national security and economic development over the
welfare of poor families, women, and children. At the rally, reuniting the emotional and
the political granted affective potency to the event. If separating the emotional and the
political is necessary for activist adoptees to articulate their progressive views to them-
selves and their adoptive kin, reuniting with actual and fictive Korean kin permits activ-
ist adoptees to reconnect emotional trauma and political injustice. Especially when
(IM)POSSIBLE LIVES
In this chapter, I explore the “(im)possible lives” of transnational Korean adoptees whose
quests for self-knowledge and adoption histories underscore Janet Carsten’s claim that
the “history of kinship is always, among other things, a political history” (2007, 24). It
has become commonplace and expected that adult adoptees will travel to their country
of birth to seek out information about their pasts and to search for relatives. For adult
Korean adoptees, who constitute the largest and oldest cohort of internationally adopted
people in the world, these movements to and from the “birth country” invariably gener-
ate new questions more numerous than the answers they provide, since the quest for
biological origins and biographical continuity more often than not reveals the contingency
of their life trajectories, the incommensurability of past and present, and the disjunctures
between the lives they have lived and other possible biographies. These other possible
lives are like the “phantom lives” that Elizabeth Honig (2005) writes of, referring to the
narratives and fictions that adoptees and adoptive parents tell about the origins of the
child. As Honig writes, phantom lives are “lives defined as possible but unlived.” She
continues: “While the recognition that their lives could have been different is common
to many transnational adoptees, the story each tells himself or herself about what that
difference would have meant is intensely personal. The narratives are often fiercely owned
and held on to: an individual dispossessed of his or her past can at least have control over
a narrative of possibility.” Like the phantom limbs of amputees, phantom lives are char-
acterized by a “yearning for something that no longer exists” (215).
The phantom lives of adoptees, however, are also marked by impossibility and
haunted by the specter of social death—of having lived an abject, better-off-dead life in
South Korea as a beggar or a prostitute, of literally dying as a thrown-away child, or of
dying at one’s own hands, for adoptees who have attempted to commit or have commit-
ted suicide. These alternative scenarios are what Laurel Kendall (2005) calls “imagined
antiautobiographies.” Shaped in relation to dominant Euro-American kinship ideologies
that continue to privilege biogenetic relatedness, Korean adoptee subjectivities are also
constrained by and respond to received narratives of adoption as the rescue of abandoned
orphans, and the closely imbricated moral logics and humanitarian rationalities that
accompany those narratives. The (im)possible lives of my title describes the simultane-
ous and dialectical relationship between the parallel lives and abject deaths of adoptees,
where phantom lives and imagined antiautobiographies converge.
Adoptees I met, especially those who had been adopted at older ages, would have
identified with the idea of phantom lives, but even as these narratives are “fiercely owned
and held on to,” they have increasingly become collectively imagined by a self-consciously
global “community” of adult adopted Koreans that has taken shape online and in person
I M A G I N E D A N T I A U TO B I O G R A P H I E S
The figure of the orphan has been a hallmark of transnational adoption since its origins
in the aftermath of World War II, and its institutionalization following the Korean War
(1950–53).1 Referred to as “orphans,” or even “war orphans,” well into the 1970s and even
1980s, Korean adoptees in their everyday lives and in mainstream representations were
framed in humanitarian terms for decades after the war. In addition, legal terminology
in U.S. immigration law reinforced the idea that these children were “orphans,” even as
the legal category of “eligible orphans” ensured that children had been consensually
relinquished by at least one parent or a legal guardian. By the 1980s, it became clear that
these children were no longer “war orphans,” and a developmentalist logic set in, framing
South Korea as a “developing nation” that had no choice but to send away its poor children.
Those two decades witnessed the largest number of children sent overseas from Korea
(more than one hundred thousand), even as the “miracle on the Han,” forcefully led by
a series of authoritarian dictators, was propelling South Korea into global modernity as
one of the “Asian Tiger” nations.
Among the oldest ones—there was some deep sadness in that group—a lot of them were
describing that their parents adopted them saying that they had saved them. . . . [There]
was a lot of missionary zeal: “God told us to adopt you,” kind of thing. . . . These are people
in their forties at this point––saying that there wasn’t a day in their lives that their parents
didn’t say to them, “You should be grateful we adopted you, you would’ve been a prostitute
or you would’ve been a beggar or something like that. You should worship the ground I
walk on.”
12 0 • ELEANA KIM
them together into the coherent frame of a book. This project of kinship memory and self-
fashioning (Carsten 2007) even became part of a family-based entrepreneurial venture. Yet
the work of kinship memory did not prepare her for the confusion and ambivalence that
she experienced when she first returned to Korea in her early twenties:
It’s a very strange thing for me. [. . .] I remember walking down the street, and thinking
the last time I really lived in Korea, I had a different name, a different family. [. . .] I just
spent a lot of time trying to figure out, now that I was back in Korea and living there for a
while, how I picked back up or if I picked back up. If I’m still Amy, still Eun-joo, or where
those two meet. At [the adoption agency], my social worker always calls me Eun-joo––that’s
how she knows me, in my case. It’s really weird, so many people calling me Eun-joo, things
like that. It was very, very—just, a lot of things to think about. So when I came back, I had
a lot of different ideas that I just never even considered.
The project of the memory book, depicting a smooth transformation of the adopted
child, from Eun-joo to Amy, from Korean orphan to American girl—which is designed
to preempt this kind of identity confusion—was thwarted by Amy’s return to Korea.
Phantom lives opened up onto (im)possible lives––the possibility of “picking back up,”
but also the question of whether or not it was possible: “[i]f I’m still Amy, still Eun-joo,
or where those two meet.” Along with the indeterminacy, incoherence, and ambiguity
opened up by her return, confronting her past life as Eun-joo and attempting to reconcile
two incommensurable histories and lives, Amy’s feelings about adoption also began to
shift dramatically:
I don’t know how I feel about adoption. At this point in my life the ideal would not be
adoption. I feel awful about saying that. Maybe it’s because of the feeling of loss I feel toward
my birth family. Not that my life is horrible or difficult. It’s weird. I’m trying to think of a P.C.
way to configure my thoughts on adoption, because I feel horrible saying that. My parents
did a very good job. [. . .] At the baby-reception home, I don’t want them to leave. I know it’s
a naive thought. I know adoption is good. My family is fabulous. [Adoption] gives children
families. At the same time I think I’m still frustrated with the idea of loss and the idea of
odd motivation of people who adopt. I don’t understand fully. Why are you adopting? Do
you want to feel better about yourself?
Amy struggled with the fact that her life is not “horrible or difficult,” and with the fact
that she felt “horrible” admitting that she had mixed feelings about adoption. Asserting
that her parents did a “good job” and that “adoption is good,” she nevertheless could not
reconcile this with “the idea of loss.” The notion that her parents’ happiness is predicated
on her own feelings of loss led her to question the egocentric motivations of adopting
parents, and to a personal struggle over the moral values of adoption. Like many adop-
tees, Amy eagerly participated in the reproduction of adoption as a system of finding
When I went to Korea it all totally exploded, in my face. [. . .] I was also going to [my adop-
tion agency] every week, to the baby-reception center, and that was actually very draining.
It was a great experience, I love going there, I want to go back there . . . it’s just those times,
when no one else is around, nurses are doing something, you’re holding one of the babies,
and you just know, not that they’re going to have a bad life, or anything like that, but you know
the possibilities, or the issues, or the positive and negative possibilities of their life, the kinds of
questions they’re going to ask, ten or fifteen years down the line. So that really got to me,
and being in Korea and trying to figure out a lot about my life if I had stayed there.
Given that she had been a “model” adoptee in her home community and had a close
relationship with her parents, Amy’s ambivalence was more marked than that of other
adoptees who were less attached to their parents and may have even been estranged
from them. Thus, the relative stability or strength of her kinship relations to her adoptive
family—that is, whether her “adoption experience” was “positive” or “negative”—is less
significant to her questioning of the received moral values of adoption than are the expe-
riences she had returning to Korea. Like Ben, the adoptee who couldn’t imagine participat-
ing in a protest about transnational adoption, Amy struggled to articulate her feelings of
ambivalence about adoption (“not that my life is horrible or difficult”) within the prevalent
moral discourses that frame the adoptee’s “good life” with “good parents.”
Amy felt “horrible” saying that adoption was not the “ideal,” because in doing so, like
Sara Ahmed’s “affect alien,” she would be the one who “converts good feelings into bad
and, as it were, ‘kills’ the joy of the family” (Ahmed 2010, 49). For some adoptees, “com-
ing out” as an adoptee was like being the “killjoy,” disrupting the positive family dynamic,
which required them to be “happy,” “grateful,” or “well-adjusted.” As a thirty-year-old
queer adoptee in Los Angeles told me, coming out to her adoptive family as a lesbian
was nothing compared to coming out to them as a transracial adoptee—that is, asserting
the significance of her adoption and Korea to her personal biography, and no longer
denying her identification as a racialized person in a racist society. Coming out is
risky for adoptees because it entails the disruption of multiple familial myths of the as-if
genealogical family, the questioning of the idea of love triumphing over racial difference
the notion of the well-adjusted adoptee. Indeed, asserting the adoptee’s difference from
the adoptive family entails “bad feelings” that can feel like a betrayal, suggesting that
parental love is inadequate for overcoming the dynamics of racialized power, imperialism,
and gendered violence that haunt transnational transracial adoption. For adoptees
who begin to question the power relations that transnational adoption encodes, even
questioning the moral value of adoption as a humanitarian good or liberal progressive
12 2 • ELEANA KIM
act can be destabilizing and threatening to the self. Amy’s experiences with the infants
being sent for adoption situated her within what has become a transgenerational, biopo-
litical project. Imagining her past and the children’s future in one spatiotemporal
plane, however, introduced a sense of emotional and ethical vertigo. Many adoptees enjoy
the experience of caring for babies who are going to be sent for adoption because it
“closes the circle,” allowing them to participate in the social reproduction of adoption
as a system that they believe to be a humanitarian good. Yet for Amy, this experience
was destabilizing and opened up a host of ambivalent feelings around the “positive and
negative possibilities” of the children’s lives, leading to a reflection on her own life “if I
had stayed [in Korea].” This moment of “moral breakdown” (Zigon 2010) led Amy to seek
out answers about the history of adoption and its political economy, and to become a
founding member of Adoptee Solidarity Korea (ASK), the first adoptee organization in
South Korea to oppose transnational adoption as a social-welfare solution for out-of-wed-
lock children.
BIOPOLITICAL CONSCIOUSNESS
Since 1999, the international Gatherings have served as important counterpublic spaces
where adoptees constitute for themselves and project to various dominant publics a
coherent “adult Korean adoptee network.” Until recently, in these and other adoptee
spaces of therapeutic talk and community building, common expressions of loss were
encouraged as modes of public intimacy, yet more “negative” emotions of anger or activ-
ism were proactively marginalized as fractious. A more recent development has brought
“unhappy” affects of resistance into acceptability: extending individuated affects of grief
and loss into collective ones of anger and mobilization, adoptees are connecting their
experiences to those of other disenfranchised Koreans, the generations of women and
men that may have been their own relatives. In these narratives, what has been “lost” is
not just natal family, original culture, and nation, but also social belonging and shared
history.
Since the founding of ASK in 2003, adoptee activists in Korea have been actively
mobilizing around reproductive politics in South Korea, and a remarkable convergence
of domestic adoptive families, unwed mothers’ groups, and birth mothers have created
new kinds of political collectivities and genealogies of South Korean biopolitics, which
include adoptees as one of many subjugated histories of South Korean modernity. Not
only are adoptees beginning to deconstruct the orphan in their personal lives, learning
that they might have histories and existing social relations in Korea; they also are his-
toricizing and politicizing the figure of the orphan as part of an ideology that made adop-
tion as a biopolitical technology possible.
Anders Müller had been placed in a South Korean orphanage temporarily at the age
of three and then, without parental consent, adopted to Denmark in 1977. In an op-ed
that was published in an English-language Korean daily, he described his rapid and
What happened to my family in Korea? Why was I adopted? My adopted parents having no
basis for understanding what I was going through just told me “Korea is a very poor coun-
try. Your family was probably poor, and the only reason they gave you up for adoption was
probably because they only wanted the best for you.” So the years went on and I continued
to accept this story, but the questions and the feeling of loss and pain never went away. I
went through more than 12 years of birth search before I found my family. Since then I
have been in Korea almost every year to visit my family and familiarize myself with Korean
society.
In getting to know my [Korean] family’s history, and in digging into Korean economic
history, I started to question the conventional narrative of a poor country which had
no option than sending children overseas for better lives. Rather, my understanding of
overseas adoption has now come to the point where I see adoption as a political choice to
address the social problems that proceeded from rapid economic transformation. (Müller
2012, n.p.)
12 4 • ELEANA KIM
and affective states point to the powerful ways in which biopolitics structure how the
good life can be imagined, and also how the promise of the good life can constrain
political imaginaries. Adoptees may be among the most privileged migrants in the
world, yet their experiences of displacement open them up to new social relations based
on the struggles that they were not able to live, the very social conditions that they were
rescued from. Against the “lucky” paradigm of the good life that is premised on (neo)
liberal notions of self-realization and the commodification of social relations made pos-
sible by the freestanding orphan, adoptees like Müller suggest that in being “saved,”
they lost not only a connection to birth family and birth culture, but also a connection to
a social body––generations of Korean women and men and their own pursuits of the
good life.
Yet Müller and other adoptees who have developed a well-considered discourse
around the politics of adoption and who advocate for a decolonization of adoptee sub-
jectivities would not say that their losses have been solved through political enlighten-
ment. Rather, following Judith Butler, “loss becomes condition and necessity for a cer-
tain sense of community, where community does not overcome the loss, where
community cannot overcome the loss without losing the very sense of itself as commu-
nity” (2002:468).
Being a part of the “Korean adoptee global network” is often framed as part of a
therapeutic journey in which individual losses can be articulated into a collective body,
helping adoptees to acknowledge their shared traumas and also to move beyond them.
Adult adoptees’ counterhistories now provide a location in which adoptees’ (im)possible
lives gain political purchase through alliance and solidarity with activist birth mothers
and progressive South Koreans. After two decades of social networking among adult
Korean adoptees, in which questions of cultural identity and belonging constituted the
basis for adoptee community building, more recent adoptee practices and discourses
foreground a collective sense of injustice, informed by postcolonial politics and a critique
of state biopower. Adoptee loss has become politicized, and the impossibility of restora-
tion and a full accounting, which in the past granted a tragic pathos to adoptee subjectiv-
ity, now fuels a resistant politics in which adoptees’ relatedness to the nation is grounded
in a generational history of collective suffering.
CONCLUSION
The reparations and commensurations that adoptees often seek through returns to Korea,
the search for relatives, and political activism are organized around origins of different
kinds—whether biological, cultural, or social-political. In this way, these agentive prac-
tices are also attempts to fashion coherent biographies and histories. I conclude with a
discussion of Korean adoptee artist Anna Jin Hwa Borstam’s performance piece Missing
O, because it suggests alternative ways in which adoptees convert their experiences of
loss into agentive modes of expression that do not seek to repair fractured histories or
12 6 • ELEANA KIM
After some years of agonizing paralysis over her work, she met other adopted Korean
artists in Scandinavia, and they formed the collective Unidentified Foreign Objects Lab
(UFOLab). As she explained to the conference audience, it was only after she embraced
her identity as an “adoptee artist” that she felt free to make art again. What was striking
to me was the fact that Borstam actively claimed herself to be an adoptee artist, and yet
among her peers at the artists’ showcase, she produced work that was the least identifi-
ably “adoption themed.” Thus, although the work might be applauded by her art instruc-
tors for taking on a “universal” register, for Borstam, her active identification as a person
with a particular life history is what allowed her to make the work in the first place.
In this essay, I take Ben’s statement as a starting point for thinking through what I
call adoptees’ (im)possible lives. These are the simultaneous and incommensurable biog-
raphies that constitute the subjectivities of transnationally adopted people for whom
kinship, memory, and identity are entangled with the contested politics of adoption.
Adoptees’ struggle for personal and biographical coherence is often performed through
a process of searching for and reuniting with birth parents as they seek definitive
accounts of their adoption histories in order to “repair the broken narrative” (Tomes
1998). Through the process of search, which is always also about a “journey of the self,”
many encounter the institutions that mediated their transformations from “eligible
orphans” to “international adoptees,” providing evidence of their past lives as expendable
bodies in the context of South Korea’s rapid modernization and biopolitical state projects.
Common experiences with South Korean bureaucracy and the revelation of unethical
practices by adoption agencies and social workers have brought long-marginalized cri-
tiques of adoption into the center, such that it is no longer surprising to see strongly
worded analyses of adoption as an imperialist practice iterated on adoptee blogs and also
in mainstream media venues.
This collective narrative offers a new biography for adoptees, most notably among
those who identify as “Koreans,” not through blood or genealogy, but through a common
history of shared suffering, oppression, and violence. Yet this narrative replaces kin-
ship––which privileges biological relatedness as the “truth” of personal identity––with
politics, which privileges state power as the “truth” of collective identity. In contrast,
adoptees like Ben suggest that there can be no consensus among adoptees about the
moral or ethical value of adoption as a highly stratified system and as a defining aspect
of their lives. What remains are the possible and impossible lives that continue to bind
adoptees, regardless of their political views, around what adoptee artist Anna Borstam
might call “the missing O.”
NOTES
1. A full accounting of the history of adoptions from South Korea is beyond the scope of
this article. More than two hundred thousand children have been adopted from South Korea
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Lo, Beth Kyong. 2006. “Korean Psych 101: Concepts of Hwa-Byung in Relation to Korean
Adoption.” In Outsiders Within: Writing on Transracial Adoption, edited by J. J. Trenka, J. C.
Oparah, and S. Y. Shin, 167–76. Cambridge, MA: South End Press.
12 8 • ELEANA KIM
Müller, Anders Riel. 2012. “Rethinking Adoptee Justice: Linking Adoptees to Other Groups
That Labored to Make Korea’s Economic Miracle.” Korea Policy Institute website,
November 12. http://kpolicy.org/1211123andersmullerrethinkingadopteejustice/. Accessed
January 30.
Tomes, Kimberly Saree. 1998. Looking for Wendy. Video. New York: Third World Newsreel.
Warner, Michael. 2002. “Publics and Counterpublics.” Public Culture 14 (1): 49–90.
Zigon, Jarrett. 2010. “Moral and Ethical Assemblages: A Response to Fassin and Stoczkowski.”
Anthropological Theory 10 (1–2): 3–15.
Nayanika Mookherjee
The power over and right of life and death is central to most contemporary events of
conflict. This is more so the case in the context of wartime rape and “forced pregnancy.”
Through the declaration of rape as a war crime at the UN Beijing conference in 1995,
feminists and human-rights activists have highlighted the consequences of gender-based
violence during conflicts. The United Nations Commission on Human Rights and the
Rome Statute of the International Criminal Court have condemned “forced pregnancy”
as a “crime against humanity.” According to the Rome Statute, “ ‘Forced pregnancy’
means the unlawful confinement of a woman forcibly made pregnant, with the intent of
affecting the ethnic composition of any population or carrying out other grave violations
of international law. This definition shall not in any way be interpreted as affecting
national laws relating to pregnancy” (United Nations 1998).1
Through “forced pregnancy,” women’s access to abortion is restricted in the context
of wartime rape, as their perpetrators might confine them till it is ensured that they can-
not terminate their pregnancies. Further, in postconflict situations the situation of
women is exacerbated, as various sovereigns—their own governments, social workers,
doctors, and national laws—might restrict their access to the termination of their preg-
nancies engendered through wartime rape. However, the politics of sovereignty in terms
of determining the right and power of life and death can also come to operate in instances
of humanitarian intervention in terms of providing access to reproductive rights in the
context of forced pregnancies during times of conflict.
13 0
In this chapter, I seek to unravel the contradictions that emerge from the realization
of reproductive rights in the face of traumatic and gendered violence in military conflicts.
Here, I focus on the figure of the raped woman during the Bangladesh war of 1971 as
well as the figure of the pregnant woman (as a result of these rapes during the war of
1971). This chapter is based on a decade of ethnographic research in Bangladesh that
involved interviews with doctors, social workers, and organizations working with raped
women, along with an examination of archival government documents and press reports
after the war. This research examined public memories of sexual violence during the
Bangladesh war of 1971 (Mookherjee 2004, 2006, 2015). By addressing the processes of
abortion and adoption that were made available to women raped during the Bangladesh
war and the subsequent introduction of family planning in Bangladesh, the chapter asks,
Which reproductive futures were to be invested in and which futures were obliterated?
These are difficult, painful questions with no easy answers. This chapter is an attempt
to address these uncomfortable issues, which lie between/along with death and life. It
seeks to track the various historical, political realities of the practices of sovereignty and
biopolitics and to provide a multifaceted, grounded account of these manifestations
beyond their abstractions.
L O C AT I N G T H E S O V E R E I G N DY N A M I C S O F
T H E R E H A B I L I TAT I O N P R O G R A M
In 1947, the independence of India from British colonial rule resulted in the partition of
India by carving out the eastern and northwestern corners of the country, which came to
be known as East and West Pakistan, respectively. Despite different imaginations (around
geography, culture, and language) of what the new state of Pakistan would be, what was
common to West and East Pakistan was the idea of a Muslim homeland. West Pakistani
authorities, however, considered the practice of Islam in East Pakistan as too Bengali
(perceived as Hinduized). Distrustful of the religious allegiance of Bengali Muslims, over
the years the West Pakistani government imposed various administrative, linguistic,
military, civil, and economic controls. This led to the nine-month-long liberation war in
1971. Thereafter, East Pakistan became independent from West Pakistan, and Bangladesh
was formed.
In 1971, with the end of the liberation war, Bangladesh was faced with the staggering
number of three million dead and two hundred thousand women raped (official and
contested statistics) in a span of nine months (Brownmiller 1975). This damage was
perpetrated by the Pakistani army and Razakars (local Bengali collaborators), purportedly
in their mission to “improve the genes of the Bengali people,” populating Bangladesh
with a new race of “pure” Muslims, and to dilute, weaken, and destroy Bengali national-
ism.2 One of the purported and oft-cited reasons for the prevalence of rape of Bangla-
deshi women by the Pakistani army was to “improve the genes of the Bengali people,”
13 2 • NAYANIKA MOOKHERJEE
of the “traditions and taboos of Muslim society” (NBBWRP 1974). At the same time the
modernist aspect of the rehabilitation program came to stand in for the symbolic evoca-
tion of the dynamism of the new nation.
Although the sovereign and biopolitical practices of the Bangladeshi state seem to be
intrinsic to the various dynamics of the rehabilitation program, these practices need to
be located in their various historical and political contexts to highlight how the state dealt
with the women raped during 1971. The very public invocation by the Bangladeshi gov-
ernment to refer to the women as birangonas was starkly distinct from the accounts of
“honour killing” (as a mark of masculine honour) that are prevalent in the scholarship
on the partition (Das 1995).4 By referring to the women as birangonas, the Bangladeshi
state was able to highlight its own position as a victim of the West Pakistani state’s abuses
as well as to emphasize the rape perpetrated by the Pakistani army on the Bangladeshi
women. The representation of Bangladesh as “deficient in the Islam it practised was
evoked repeatedly by Pakistani forces during the war—it folded into the rapes of Bangla-
deshi women and men by the Pakistani soldiers who sometimes saw themselves as
physically introducing Islamic substance into perceived nonIslamic bodies” (Mookherjee
2012). The Bangladeshi government’s position further constituted a distinct break from
what it rendered as the Sharia-law-driven “Pakistani” way of dealing with the issues of
rape and reproductive violence. Under Sharia, rape is often seen to be akin to jena (adul-
tery) for married women and fornication for unmarried women. Thus, declaring that
women raped during 1971 were war heroines enabled the Bangladeshi government to
distinguish itself as practicing a different kind of Islam than that of the Pakistani govern-
ment. Thus it subversively overturned the label attached to Bangladesh as a country
practicing a supposedly deficient form of Islam and instead helped it to claim that it was
a different kind of Muslim nation, one that valued its women and their contributions to
the freedom struggle.
Not only was this claim of being a different kind of Muslim nation projected for the
benefit of external entities; it was also implicated in the internal dynamics of the “taboos
and traditions” of Muslim society within Bangladesh, which the rehabilitation program
was seeking to deliver the women from. According to older feminists, this declaration of
the raped women as birangonas was directed toward the religious practices of Bangla-
deshi communities who were deemed to be rural, illiterate, and traditional by the left-
liberal activists in Dhaka and who, it was feared, were bound to ostracize the birangonas.
For the younger feminists, this declaration was meant to address and correct middle-
class hypocrisy around the transgression of female chastity.
Thus the rehabilitation program and its principles came to stand in for the dynamism
of the new nation. The aim to reduce the ostracizing of raped women was deemed pos-
sible only under a left-liberal Awami League government led by Sheikh Mujibur Rehman,
considered by some to be the father of the nation. At a time when abortion was not widely
available in Europe and America, Bangladesh’s role in introducing abortion to deal with
issues of forced pregnancy was unprecedented. These practices of the “Muslim” country
L O C AT I N G L I F E I N T H E P O W E R O F D E AT H : T H E R O L E O F L AW S
Not only did the invocation of the raped woman as a birangona generate a way through which
life could be accorded to her. At the same time, the figure of the war heroine can be juxtaposed
to the various laws that sought to reconfigure the raped and pregnant women of the war of
1971. The state established a Relief and Rehabilitation Board in 1972 that was charged with
the specific duties of rendering relief and rehabilitation to war-affected women. The board’s
work was framed in terms of “emergency.” The emergency here was understood in terms
of the numbers of women who were pregnant as a result of rape. Different newspapers
estimated these numbers at twenty-five hundred to twenty-five thousand women. The work
itself was primarily organized around two processes: abortion and adoption. The clinical
aspects of the “emergency programmes” undertaken by the Rehabilitation Board were
expressed in this manner: “for the termination of pregnancies and treatment of gynaeco-
logical disorders for the victims of the Pakistani army’s physical torture” (NBBWRP 1974,
7)—that is, abortion, the illegality of which was temporarily suspended (since under Sharia
law under the Pakistani government, abortion was illegal), whereby the practices of abortion
were located in realms of legality and illegality. Expressed in board documents as “medical
help” for the termination of pregnancies, abortions were carried out with the assistance of
American and British doctors. This medical assistance was organized under the auspices of
the International Planned Parenthood Federation (IPPF), London, which, besides donating
money, provided medicine and the services of internationally famed gynaecologists who
trained other local doctors in the latest techniques of abortion. The “Abortion Centers” were
set up in middle-class residential areas in Dhaka, which alone carried out 95% of the total
abortions performed, more than one hundred in its first month, with an overall number of
twenty-five hundred over time. Western feminists applauded these efforts as proof of
women’s access to reproductive rights, in contrast to the restrictions prevalent in the United
States (Greer 1972; Brownmiller 1975).
In interviews undertaken in the late 1990s, social workers and doctors vividly recall the
abortions and the state of the women after they were “cured” (Akhtar et al. 2001, 221, 238).
13 4 • NAYANIKA MOOKHERJEE
Dr. Geoffrey Davis, an Australian doctor, estimated that 200,000 women underwent abor-
tion and hence considered the number of raped women to be higher, at 470,000, instead
of the official 200,000 (Banglar Bani, December 1972 [genocide issue]). Abortion was being
carried out at this time as a government initiative. However, in contrast to Pakistan, which
disallowed abortion according to its Sharia law, there seemed to be no legislation or legal
fiat with respect to the practices of abortion in Bangladesh. Yet even in the absence of leg-
islation that would legalize abortions or penalize providers performing them, Davis found
that local doctors were hesitant to carry out abortions. Since the Koran disallowed abortion,
menstrual regulation (MR) rather than abortion was made legal in Bangladesh in 1973.
Menstrual regulation allowed for the termination of the fetus within ninety days, within the
range of Islamic law’s (Sura al Bekhara) consideration of when and at what point life comes
to the fetus (personal communication from a doctor). The time frame within which abor-
tion is usually possible is twenty-four to twenty-eight weeks. Following the norms estab-
lished by Islamic law, MR, as the legal form of pregnancy termination, continues to be
central to Bangladesh’s family-planning program today. MR is not considered abortion, yet
it provides cheap and safe termination of pregnancy without circumventing the law.
Yet in the period 1971–72, abortions—not MR—were being performed through this
internationally supported government program in a context where abortion had an
ambiguous relationship to law. It was neither illegal nor legal in this period. This ambi-
guity was expressed, for instance, in a doctor’s denial that abortion had taken place
(though it was known by other doctors and social workers that she had helped/conducted
the abortions). In spite of the well-documented role of the International Planned Parent-
hood Association (IPPF) in facilitating abortions in Bangladesh (NBBWRP 1974; Brown-
miller 1975; newspaper reports), IPPF claimed ignorance and said it had no records of
its role. Throughout my fieldwork, I found people quite reticent to talk about the preva-
lence of abortion after the war, perhaps because abortion, in contrast to MR, is illegal in
Bangladesh today. Curiously, no documentation can be found about the legalization of
abortion, and its fiat seems to be based on word of mouth and its neither legal nor illegal
status. As soon as the pregnancies caused by rape during 1971 were “cleansed,” MR5 was
introduced as the acceptable legal form of termination of the fetus in Bangladesh.
Alongside abortion, women were also giving birth to babies born as a result of rape.
In my interviews, physicians delineated a “two-tier cleansing process,” as they called it:
either the women were conditioned to go through abortion, or they were urged to give
up the babies for adoption rather than keep them and develop an attachment to them. In
discussions with social workers, some were of the opinion that most birangonas would
not want to look at the babies after they were born. Other social workers, contrarily,
asserted that some of the women cried when the babies were forcibly taken away from
them. Such assertions of mother–infant attachment were also echoed by politicians, such
as a British Labour MP I interviewed, who recalled how a young Muslim woman from a
poor family wanted to meet the adoptive parents before agreeing to give up her baby for
adoption.
13 6 • NAYANIKA MOOKHERJEE
instead of foreigners. The process of appointing a guardian (formerly a government offi-
cial, now a Bangladeshi citizen) was also deemed to be consistent with Muslim personal
law, and by birth the child was defined by the contours of the personal law (Chowdhury and
Shamim 1994, 25). Henceforth, religious laws would predominate over secular laws in the
case of acquiring guardianship (instead of adoption) of a child.
Organizational, bureaucratic practices surrounding abortion were considered neces-
sary for the “cleansing” of the wombs of the women. In the case of advanced pregnancies,
women were meant not to have any emotional, maternal attachment to their newly born
babies. Hence, the womb of the Bengali woman is made accessible again not only
through the birth of the child, but also through ensuring an emotional effacement
between mother and child, by keeping the women away from their babies—the latter
being further obliterated from Bangladesh through international adoption. Their pres-
ence would affect the social structure and perpetuate painful memories of the war. The
logistical issue of separating the children from the women thereby became significant.
The raped women had to be freed from the motherhood of these babies so that they
could be reinstated in their roles as mothers and wives within legitimate heterosexual
alliances guaranteed under the umbrella of the new nation.
Both abortion and adoption inhabited peculiar relationships to the law in the wake of
wartime rape. Yet these relationships were quite different. In the case of adoption,
although the prevailing Muslim personal law and Sharia law forbade adoption, these laws
were informally and temporarily suspended during this postwar context. This suspen-
sion occurred first in terms of a ceasing of enforcement of the law and subsequently in
legislation that legalized international adoption. Children born as a result of wartime
rapes were immediately put up for international adoption, even before it was “legalized”
in 1972. Yet, as we have seen, in time this legislation was repealed, and guardianship
replaced adoption.
In the case of abortion, it never received an official legal or illegal status. Although inter-
national medical assistance was mobilized to provide abortions and education on how to
perform abortions to physicians, much like the international humanitarian assistance to
set up orphanages and international child adoption, the practice of providing abortions was
tacit and surrounded by silence. Today, legislative debates are not available, nor is medical
assistance documented in the archives of state institutions and international organizations.
Framed within a discourse of “emergency,” abortion was legitimized as a practical necessity
arising from the crisis of wartime rape. An oft-repeated comment by social workers and
doctors who worked in the rehabilitation program is that they “did not know what else to
do. The women had to be returned back to society.” This necessity of “returning” the
women reflects Giorgio Agamben’s point: “not only is necessity not unrelated to the jurid-
ical order, it is the first and originary source of law” (1995, 27). Though not legal right
after the war, abortion did operate as a form of fiat. In spite of local doctors being reluctant
to carry out abortion, foreign medical personnel could carry out abortions knowing that
there was government authorization for it. It is true that the mass rapes and subsequent
C O N C L U S I O N : P U B L I C I T Y A N D P O S T WA R L E G A L
C O N F I G U R AT I O N
There is no doubt that the Bangladeshi government’s role in providing access to abortion
and to the adoption of children enabled many women who had been raped during the
war and had “forced pregnancy” imposed on them to find ways to rebuild their lives.
Behind these extensive programs of “rehabilitation” lay the raw wounds of innumerable
“war heroines” and the choices they had been confronted with. That reproductive rights
should be accessible to women across a whole range of circumstances goes without say-
ing. However, when governments intervene to ensure these rights, reproductive rights
become intertwined with biopolitical modalities.7
If biopolitics is the operation of different kinds of political power through which the
reproduction of a population is regulated, here the humanitarian need of access to abor-
tion and adoption in a postconflict situation becomes the means through which such
power is exercised by the newly formed Bangladeshi state and the multiple sovereigns
acting in its name. By ensuring access to the humanitarian need of the hour—that of
abortion and adoption—the state also ensured that these raped women would be avail-
able for future legitimate sexualities and motherhoods in independent Bangladesh.
Through investing in these reproductive futures, and obliterating the motherhoods and
futures of the “war babies,” the legitimacy of the newly formed Bangladeshi state is also
13 8 • NAYANIKA MOOKHERJEE
ensured. Here, the provision of reproductive rights becomes the means through which
biopolitics controls and regulates the racial connotations and sexuality of the population.8
We have seen how war-related violence (sexual and reproductive) has brought the state
and international organizations centrally into issues pertaining to women’s reproductive
rights and the concerns with sexually and racially pure populations in the context of the
Bangladesh war of 1971. The operation of sovereign power, however, can be compre-
hended by locating these biopolitical modalities within historical and political contingen-
cies and across different state formations and humanitarian interventions.
It is clear that the very laws enabling the practices of abortion and adoption were
ambiguous. This ambiguity primarily concerned itself with the presence of the child and
the need to expunge it from the newly formed nation. At the same time the birangona
could be a citizen of this new nation only as a nonpregnant figure. This is where the sov-
ereign power of the new nation through the rehabilitation program comes into play. While
being intertwined with ambiguity, the interventions and regulating mechanisms of abor-
tion and adoption had direct impact in instituting ideas of what constitutes life and of the
place of the woman in relation to war and the nation. The heteronormative concerns of
the rehabilitation program are primarily with “recovering” the war heroines for the project
of the new nation—either to be positioned as productive workers or to be located within
legitimate sexual alliances for the purpose of lawful reproduction. These practices would
make sense only if we keep in mind the various modernist dimensions of the rehabilita-
tion program, which through its practices around gender issues (relating to the raped
woman) sought to stand in for the new vigor of the independent Bangladeshi nation. This
vigor would also make sense in the way the state, through its rehabilitation program, also
saw itself as a victim of Pakistani military abuses and at the same time distinct from those
abuses as a Muslim nation. Through this vision it could deploy its image as an inauthen-
tic Muslim country to make a point about its distinctive Bengali Muslim practices.
Bangladesh’s complex negotiation with its identity is also revealed in the legal trajectory
surrounding abortion and adoption. That the events of abortion and adoption of the “war
babies” after the war could operate without a legal framework highlights how norms and
laws were suspended so as to actualize and operationalize the concern relating to the
“cleansing” of children born as a result of wartime rape. This is because “authority proves
itself not to need law to create law” (Agamben 1995, 16). That a certain form of these
exceptional practices—namely, MR instead of abortion, and the Guardian and Wards Act
instead of international adoption—becomes the norm and is intitutionalized in the post-
war Bangladeshi context highlights how the state seeks to establish Islamic personhood
as a foundation for its operation in independent Bangladesh. This discursive shift to MR
in 1973 occurs in the context of various international population-control policies being
introduced in Bangladesh (Murphy 2013) as well as Sheikh Mujib’s attempt to seek a
greater alliance with Pakistan and other Islamic countries. The shift to the normative
connotations of the Guardian and Wards Act in the early 1980s coincides with the
increased Islamization and militarization put in place by General Zia since the mid-1970s.
N OT E S
1. The last sentence highlights the compromise adopted in this resolution vis-à-vis the
debate between the pro-life and pro-choice groups.
2. See Ali 1983, 91; Guhathakurta 1996; Mookherjee 2012a.
3. The government designation of “war heroines” applied to all women who had been
raped during the war, as women from all socioeconomic backgrounds encountered rape. It is
important to note that the history of rape has remained a topic of literary and visual media
through the last forty-two years in Bangladesh, thereby ensuring that the raped woman
endured as an iconic figure.
4. For similar debates during the partition of India, see Butalia 1998; Das 1995; and Menon
and Bhasin 1998.
5. According to Murphy 2013, MR was the name given to a device in transnational family-
planning circles organized by USAID’s Office of Population and the IPPF. It was designated
as “the evacuation of uterine contents from a woman who is at risk of being pregnant, before
she can be declared ‘obviously pregnant’ by clinical examination and other diagnostic meas-
ures” (Soderstrom 1979, cited in Murphy 2013).
6. Reference: President’s Order no. 124 of 1972, later repealed by Ordinance no. 5 of 1982
(Dhaka Law Review, 1972–75).
14 0 • NAYANIKA MOOKHERJEE
7. My critique of this government intervention should not be read as a pro-life position.
8. For an insightful analysis on race and biopower in the context of apartheid and slavery,
see Mbembe 2003.
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Chowdhury, A., and I. Shamim. 1994. Abandoned Children: Better Home, Better Future. Dhaka,
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Guhathakurta, Meghna. 1996. “Dhorshon ekti juddhaporadh” [Rape is a war crime]. Bulletin
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Habiba, U. 1997. “71 er Gonodhorshoner bichar proshonge [The issue of justice as regards
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Hansen, Kathryn. 1988. “The Virangana in North Indian History: Myth and Popular Culture.”
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14 2 • NAYANIKA MOOKHERJEE
7
BLEEDING DREAMS
Miscarriage and the Bindings of the Unborn in the Palestinian
Refugee Community of Tyre, South Lebanon
Sylvain Perdigon
In recent years, the discourse of trauma has provided a medium through which the Pal-
estinian family came to elicit peculiar textures of anxiety. Didier Fassin and Richard
Rechtman (2009) thus note the “power of collective evidence” acquired, among global
audiences, by the notion that historical subjects like Palestinians are prone to misuse
each other by misusing the pains inflicted upon them by political violence, war, and the
(post-) colonial condition. A compassionate demand often accompanies such anxieties:
that those subjects should be given access to psychotherapeutic pedagogies aimed at the
reclaiming of individual mastery over traumatic representations of the past (e.g., Fischer
2007). Yet one is reminded here of Veena Das’s important warning that “narratives [of
violence] cannot be told unless we see the relation between pain and language that a
culture has evolved” (Das 2007, 57). In this chapter I want to show how, in the Palestin-
ian refugee camps of Tyre, South Lebanon, an enigmatic life form called al-Qireyne
contributes to keeping alive an alternative analytical space for attending to the quandaries
of kinship, or of “the mutuality of being” (Sahlins 2013), in the spaces of living and dying
that the politics of empire, nationhood, and sovereignty precipitated in the eastern
Mediterranean in the last hundred years.
Toward this end, I explore a register of experience and discourse associated in the
camps of Tyre with the encounter of al-Qireyne. This experience is difficult to character-
ize in one fell swoop, falling as it does somewhere between dreaming and spirit posses-
sion while not coinciding with either of them. In the words of my Palestinian friends and
interlocutors, “al-Qireyne is not a dream, but she comes in one’s dreams.” The formula, as
1 43
we can see, slips from a negative predicate to one that indexes the context and the mode
of appearance of a subject whose identity remains studiously unspecified. What the
grammatical break felicitously conveys, instead, is the passive experience of the force of
a mysterious life-form originating outside the subject. The experience is always unset-
tling, upsetting, dysphoric. What signals the encounter of al-Qireyne are not only dreams
that are peculiarly frightening and gloomy, but also the dreary continuation of these
dreams in waking life. These effects make their presence felt as deep anxiety and mental
and physical exhaustion, as well as in episodes of miscarriage and infertility.
Al-Qireyne dwells in the deep recesses of the everyday, and it—she—seems to have
escaped the attention of even sharp observers of camp life.1 She would have escaped my
attention, too, were it not for a fortuitous bit of conversation in July 2007. It was brutally
hot that day, and Nasser and his wife, Ibtissam, two members of the family that took me
in when I lived for two years in al-Bass refugee camp, had urged me to spend the after-
noon with them in the relative coolness of their house.2 The conversation had been
wandering rather idly, when at some point I mentioned old studies I had read about the
belief in “al Qarineh, a she-demon, who attacks children” in Mandatory Palestine (e.g.,
Canaan 1927). There was some initial confusion caused by my pronunciation of
“Qarineh,” until Ibtissam recognized what I was speaking of—“Iiiiiii! You mean al-
Qireyne”—and went on to say that, indeed, she “had had al-Qireyne” herself when she
was pregnant with her first child, Khadija, now aged ten. Nasser then intervened, admit-
ting somewhat uneasily that he, too, “had had” al-Qireyne: when he came back to Tyre
from Saida, where he had spent the last years of the war, and a few months before he got
married. I realized before long that the encounter of al-Qireyne is a common, dreaded
occurrence in the camps of Tyre. By simply mentioning al-Qireyne to my closest contacts,
I had drawn, after a week, a list of a dozen other of her victims who were willing—in
some cases, in fact eager—to speak to me about their experience.
Lest it be misunderstood, my argument is not that suffering at the hands of al-Qireyne
constitutes a Palestinian vernacular of trauma. Instead, I suggest a certain family resem-
blance between two idioms of psychic and bodily suffering while also maintaining their
definite incommensurability. The family resemblance concerns the constraining power
and unruly life of certain images in the mind. Like the notion of trauma that hinges on
the disruptive quasi-agency accorded to some mental images, al-Qireyne’s imagery, too,
evokes the unruliness of unbidden thoughts and images that invade one’s being. How-
ever, the destinies of the two concepts branch off irrevocably when it comes to the hori-
zon, or telos, of these two concepts. Whereas the treatment of trauma aims at the reclaim-
ing of mastery over those representations that have taken over the subject, there is
no such telos to the images in which al-Qireyne manifests herself. To the contrary, the
recognition of al-Qireyne’s works in one’s own dreams signals the acceptance that a
radical, indomitable separateness may, on occasion, lie in one’s imaginary itself. And if
such an occasion also signals threats hanging over the connections of al-rahim—the
word my Palestinian interlocutors in Tyre use to speak of the most intense ties of
14 4 • SYLVAIN PERDIGON
kinship—it also becomes in their hands an occasion to care for, nurture, and intensify
these connections.
W H AT I S A L - Q I R E Y N E A N Y WAY ?
The signifier qarin appears eight times in the Quran, often (e.g., 43:36) to speak of a
mysterious and demonic “companion.” The term also appears in a hadith frequently
quoted in commentaries on this particular line: “The Messenger of God (may peace be
upon him) said: There is none amongst you who does not have his qarin [qarinuhu] from
amongst the jinn [men al-jinn]. They said: you too, O Messenger of God? Thereupon he
said: Yes, but God helps me against him and so I am safe from his hand and he does not
command me but for good” (Sahih Muslim 6757).
Exegetes of the Quran typically interpret these passages so as to confine its relevance
purely to the domain of personal ethics. In this reading, al-Qarin is described as the
demon (al-shaytan) individually appointed to each human being and tasked with tempt-
ing and misguiding her with its whispers. Muhammad Asad takes this ethical interpreta-
tion to the limit by translating “shaytan,” in the Quranic aya mentioned above, as “evil
impulse,” and “qarin” as “his other self,” thus also enclosing al-Qarin definitely into the
subject. Such interpretations stand in tension with alternative, orally based traditions
that, on the contrary, emphasize the relative exteriority of al-Qarin (often in the feminine
form al-Qarina) to the self, and endow it with attributes such as a sexual identity and
personality traits—including, most prominently, jealousy (e.g., Drieskens 2008, 151–54).
These ontological debates, however, do not resonate strongly with the concerns of
everyday life in the camps in Tyre. My Palestinian interlocutors who either were them-
selves afflicted by al-Qireyne or attended to the anguish of others seemed to adhere to a
shared understanding of al-Qireyne as a reality intermediate, and mediating, between the
jinn and the self (al-nafs). When asked, many of them described al-Qireyne as “mush jinn,
bas men al-jinn” (literally, “not a jinn, but from the jinn”), in a phrase that in some
respects echoes the words of the Prophet in the aforementioned hadith. But that’s about
it. When I persisted in asking broad, definitional questions such as “Shou al-Qireyne?”
(“What is al-Qireyne?”), the answer as a rule was an unapologetic “I don’t know.” Most of
my interlocutors expressed or showed a clear reluctance to offer a decontextualized
account of al-Qireyne divorced from the evidence of their own experience.
The encounters with al-Qireyne disproportionately coincide in the camps of Tyre with
difficult pregnancies or stress and anxiety about female fertility. Women and men, how-
ever, both insisted that gender (womanhood) and pregnancy are, at most, factors that
increase one’s vulnerability to the attacks of al-Qireyne, and that men, too, suffered such
attacks. They were anxious that I might map its disruptive (un)doings too hastily onto
the gendered boundaries that in numerous other respects structure and overcode every-
day life in the camps. With this caution in mind, I now turn to two actual case histories
of encounters with al-Qireyne. The first of these has an ideal-typical quality, insofar as it
BLEEDING DREAMS • 1 45
gathers together elements that recur individually or in clusters in the other accounts. In
this respect, it is useful for laying out some essential qualities of the medium, or milieu,
that al-Qireyne’s irruptions help to precipitate, and render available for further transac-
tions within the dar (joint, patrilocal family residence) and beyond.
MANAL
Manal was twenty-two years old when we sat together, in October 2007, for a conversation
about her experience with al-Qireyne. The eldest of five children, she had been then living
for three years in the dar of her father-in-law, Abou Nabil, in Jall al-Bahar, a cramped
Palestinian Bedouin “gathering” (tajammu’: unofficial squatter camp) stretching on a
narrow strip of land between the sea and the coastal road north of Tyre. Emm Nabil, her
mother-in-law, attended the interview and took a great interest in it, sometimes adding
details and making comparisons with her own experience. I also interviewed Manal’s
father, separately, on the role he played in the episode.
Things had started three years before, when Manal first became pregnant. She sud-
denly found herself having scary dreams. Most of the time, she would see a huge snake
coming through the door to devour her; once, thousands of smaller ones rained down
upon her from the beams that hold the corrugated iron roof. Sometimes, she would feel
that somebody was forcing a living snake down her throat to make her give birth before
term. Or else she would see somebody, or something, hitting her on the stomach in her
dreams, and she would wake up feeling sore and enervated. On awakening, she would
sometimes find marks on the veins of her arm, as though a needle had been used to
siphon off blood from her body. As a result, Manal was terrified to even go to bed. In this
period she experienced repeated miscarriages—six in total.
Manal was told by others in the settlement that her miscarriages might be caused by
the mischief of al-Qireyne, about which, she insists, she had not heard before. Her father,
Nabil, took a significant part in the story from that point on. He explained to me that the
same thing had happened four or five times in the family, including to his own sister. In
his rounds as a fish seller in the hills of Jabal ‘Amil, he learned about a sheykh (healer). A
niece who had been married off in the same village from which the sheykh hailed, and
who had herself suffered many miscarriages, vouched for his powers.
Nabil decided to take Manal to the sheykh for consultation because he seemed honest
and genuinely benevolent. Manal, thus flanked by her father and mother-in-law, saw the
sheykh twice in a fortnight, each time in his grocery store, where he received the afflicted.
The first time, he told Manal not to offer any information or comment, but to answer
only yes or no to his questions. After ten minutes of such exchanges, he wrote down
“something difficult to read” on a sheet of paper and gave Manal precise instructions on
how to use it. Three days in a row she was asked to rub her whole body with this paper
strip after dipping it in oil. After that, she was to put it in a small bottle and bury it in a
clean (tahir, lit. “pure”) place—in this case, the orange grove behind Abou Nabil’s dar. A
14 6 • SYLVAIN PERDIGON
couple of weeks later, having completed this ritual, Manal returned to the sheykh, who
did not ask her anything this time but simply gave her the hijab (“talisman,” lit. “screen,
veil, protection”; pl. hujub) that he had prepared specifically for her. It consisted of a
larger piece of paper, with a long text written in red ink and with a nice smell like musk
or ambergris. Again, Manal and her father did not know what the text actually said; she
knew only that the text was from the Quran. On the sheykh’s advice, she asked a cobbler
to sew the folded hijab and seal it within a small sheath. After she started to wear it, her
dreams became normal again. After some time, she gave birth to her and Mansour’s first
child, a boy, Salah. Now Manal wears the hijab on her body at night or, alternatively, leaves
it with Salah when she feels that al-Qireyne is coming to him—a possibility to which she
had been alerted by the sheykh.
Like many other interviewees, Manal depicted herself as enduring an experience that she
only later recognized through the mediation of relatives, neighbors, and the sheykh as
persecution by al-Qireyne. The extralinguistic authenticity and reality of her story and of
al-Qireyne more generally is shored up in this and other cases by the temporal sequencing
of an experience that remains elusive till named by others. Such an account, in other
words, seems to beg the delicate question of the performative aspect of the diagnosis,
and of its effect, in particular, on the deferred and recollected experience of symptoms.
Yet it also contains indications that this process cannot be equated with a straight causa-
tive line going either from symptoms to diagnosis (as in Manal’s presentation) or from
diagnosis to (the retrospective misrepresentation of ) symptoms, as in the odd skeptical
construal of al-Qireyne that I came by in Tyre. The occasional placement of the hijab next
to an infant—Salah, for example—suggests that one gets drawn into the lifeworld where
the intrusion of al-Qireyne is possible at different stages and through modes of transmis-
sion that do not always involve the medium of expository discourse. What’s more,
Manal’s account shows the recognition of al-Qireyne’s intervention to be performative in
another, potent way: it recasts relationships in and between dars (here, the household
into which Manal is married and the one in which she was born) into a new context (cf.
Boddy 1989, 191)—one transfigured by the addition of at least three fundamental, new
dimensions.
Fear. My interlocutors in Tyre see the actual forms in which al-Qireyne appears as a fairly
inconsequential matter. For them, the phenomenon’s essence is the state of fear in which
it plunges its victims. It is all the more significant since they also consider fear (al-khawf,
vb. bikhaf) to be an emotion that is at once spiritually misleading (God only is to be feared)
and practically incompatible with the self-discipline necessary to beat the demoralizing
uncertainty of refugee life. In contrast, the diagnosis that a member suffers from the
assaults of al-Qireyne clears a space in the dar for a type of fear exempt from—because
BLEEDING DREAMS • 1 47
not amenable to—the censure and impatient remonstrance that this emotion habitually
invites. Al-Qireyne gives a right to fear, as it were, that camp life evokes and disapproves
of at once.
A nonhuman form of life. The advent, and mooring, of the signifier al-Qireyne also signals
the virtual presence of a nonhuman agent mediated through the victim’s body. Although
the texture of its various, oneiric incarnations eludes clear-cut categorization, animality
is a dominant streak. A majority of my interlocutors, like Manal, strove against one or
many snakes, but others mentioned rats, black cats, or a camel. For Emm Nabil, Manal’s
mother-in-law, al-Qireyne had even taken the form of a helicopter hovering threateningly
over her for hours on end. Last but not least, al-Qireyne also occasionally donned repulsive
human forms while hounding some of my interlocutors: an ugly old woman, a baby with
a horribly wrinkled face, or even a beloved relative who suddenly takes on a ghastly coun-
tenance. Such human appearances are always associated with specific actions on al-
Qireyne’s part: hitting the victim’s abdomen when she is pregnant, strangling her or him,
giving him or her a beating.
Dream bleeding into waking life. Finally, the naming of al-Qireyne’s role in the woes of a dar’s
member attests to the possibility that dreams bleed into the physical world—the dar itself
becoming, by the same token, the primary scene of this bleeding. Contacts with al-Qireyne
are certainly not the only occasion for this type of porosity. Dreams constitute an everyday
feature of dar conversation, and what fuels their circulation is in good part a shared sense
of their potential relevance to what is going on or is about to happen. But the irruption of
al-Qireyne gives a more dramatic consistency to the crossing of dreams into reality. Witness,
for example, the bloody trace of a needle on a vein of Manal’s arm. One could say that al-
Qireyne inscribes in her victims’ bodies signs that operate as pivots, or thresholds, between
the world of dreams and waking life. Miscarriage, a bloody speck on the arm, a suffocating
weight on the chest, or even just fatigue becomes an event of signification signaling to all
the members of the dar the contiguity of an enigmatic other scene. The sense of this con-
tiguity endows the day-to-day temporality of relationships with particular intensities: at
least, this is how I understand the intriguing fact that virtually all my interlocutors who
struggled with al-Qireyne emphasized that just going to sleep became a terrifying thing to
do. For, lest we fail to notice it, this “imaginal” (Corbin 1976) other scene is like the obverse
of the dar, an institution entirely built on “maximally embodied relations” and the value of
time spent together. One has no choice but to face the dangers of al-Qireyne alone.
Despite Manal’s successful cure from her problems with al-Qireyne by means of a hijab,
the making and manipulation of these devices were the subject of fierce disputations
(ikhtilaf) in the camp of Tyre. About half my interlocutors afflicted by al-Qireyne con-
14 8 • SYLVAIN PERDIGON
demned such practices in the strongest possible terms. Many of my friends in Tyre would
describe themselves as mutadayyin, a label applied to a form of self-fashioning that
involves everyday practices of authentication in pursuit of a modernist and rigorist form
of Islam purified of al-taqalid (here, traditional practices and usages not in accordance
with the orthodox sunna). For them, the dismissal of hujub and cognate practices indeed
constitutes a perfect example of piety thus understood; in order to be rid of al-Qireyne
they would advocate their own recitation (including in one’s dreams) of specific Quranic
suras rather than the writing of the text by a learned stranger. What is it, then, that makes
the use of hujub so reprehensible? Amal, one of the residents of the dar I lived in while
in Tyre, explained that it is haram (forbidden) to sunder the text of the Quran, and she
referred in particular to the healer’s alleged usage of abbreviating Quranic verses on hujub
by writing down only the first letter of each word. As for Nasser and Ibtissam, they pointed
to the sums of money involved, however small, so that the process of actualizing the text
was tainted by the lure of material gain. The difference in semiotic ideology that sets
mutadayyins like Nasser, Ibtissam, and Amal apart from hijab users such as Manal does
not concern the paradoxical powers of the Quran’s words: their capacity, as text, to exist
independently from, and travel across, an infinity of contexts and, at the same time, to
forcefully reshape the particular context in which they are actualized is never in question.
Rather, the controversies concern the work on the self that the mobilization of this poten-
tial requires—lest one forget that the Quranic text puts demands on al-Qireyne but on the
supplicant, too. In other words, the recourse to the hijab sidesteps the demands one must
put on oneself in getting rid of the perils of this alien intruder.
LAMIS
BLEEDING DREAMS • 1 49
suffocation. Shortly after the birth of yet another new girl, Emm Ghassan had the same
dream again and woke up to find that the baby was choking. Her family immediately took
both of them to a sheykh who wrote a hijab and said that the name of the child, whom Emm
Ghassan had called Wehde, like her previous, deceased daughter, had to be changed. The
sheykh suggested the name “Lamis,” of which she herself says, “It suits me best, otherwise I
would not live.” There was a price to pay for surviving, however: al-Qireyne passed from her
mother to her (“She came from her to me. [. . .] I carried al-Qireyne”).
Lamis spoke sparingly of her childhood and teenage years. When she was nine, her
father left her mother to marry a Lebanese woman from Tyre. For Lamis it was still a
burning wound, whose pain is compounded by the memory of the years of hardship that
followed. Lamis described the abandonment by her father as the original event that cast
her into a dark hole of destitution from which she had yet to emerge completely. Not
incidentally, it is also the time when Emm Ghassan and her children were stripped of a
permanent abode in al-Bass camp. They relocated to a rented ground-floor flat in the
ghastly, ramshackle tenements of al-madine al-sana’iyye—a far less secure environment
for a Palestinian refugee family at the onset of the 1975–90 war.
Lamis got married in 1981 at the age of seventeen. Her husband, Khaled, was born and
grew up in Rashidiyye camp, three miles down the road. There are significant differences
between the social makeup of Rashidiyye and al-Bass, and intermarriage between the two
camps was not very common. Lamis said that she was never fully accepted in Khaled’s
family, where “they marry each other.” There might be some exaggeration in this statement
since, ten years after Khaled’s death, ties were still strong enough for Lamis to take shelter
with one of Khaled’s brother during the bombing of Tyre by the Israeli air force in the July
2006 war. In any event, the couple did not settle in Rashidiyye, counter to the norm of
patrilocal residence still widely followed in the camps of Tyre, but next to Emm Ghassan
in al-madine al-sana’iyye. This proved to be a fateful decision when, one year later, in June
1982, Israeli forces invaded Lebanon. After a fierce battle, Israeli forces took control of the
area: “They asked us to empty the houses and to go to the rest house. We stayed, all gathered
there, we came back, we found the houses destroyed” (October 2006).
For a time, Lamis and Khaled moved up north to the small town of Choueifat, in the
southeastern suburbs of Beirut. She gave birth to her first child there, a daughter, ‘Abir,
after a pregnancy during which she “did not see anything.” Lamis and Khaled did not stay
long in Choueifat, though:
There started a war, in Choueifat [in 1983] between the Lebanese Forces and the Druze, a
sectarian war. Again a shell fell upon the house, and it was gone.3 I had gone down for a
visit to my husband’s sister’s, in Beirut, in Mazr’a. I was stuck. I had come for a visit and
I stayed at her place for three years. After three years, we rented a house and stayed in Borj
al-Barajna [camp], on the airport road. We lived there for nine months. The war between
the Palestinians and the Amal movement started, also a sectarian war. A shell fell on the
house, everything was gone [rawwah kul shi]. As for me, I had come to Tyre for a visit to
15 0 • SYLVAIN PERDIGON
my family, I was pregnant with Rabah. I came for a visit, I did not have any clothes, noth-
ing. I had come for the day, and I was stuck. It was in 1986. (October 2006)
Lamis and Khaled ended up staying at his sister’s for two mortifying more years: “We
stayed at his sister’s for five years. We had no home, we were without a home. We were
guests [duyyouf] for five years!” (October 2006).
It was after the birth of ‘Abir, and after the loss of the house in Choueifat, that Lamis
started to see al-Qireyne: “After ‘Abir, I was pregnant again. I saw a woman hitting me on
my back. And there was a group of people. When I woke up, I was tired. They took me
to the hospital, and I had a miscarriage. It always happened when I was pregnant with
boys. Four died like that. I would always see a woman, hitting me on my back or running
after me, and I would run away and she would catch me. But not the same woman. I had
four miscarriages, all boys, all in the same way” (December 2007).
This is how Lamis dates some of these miscarriages later in the interview: “Once I
had a miscarriage when there was a war between the Druze and the Phalangists. I also
had another miscarriage when there was a war between the Murabitoun and the Ishti-
rakiyin. They took me to al-Maqassed hospital” (December 2007).
Eventually, when, still living at her sister-in-law’s in Beirut, Lamis was pregnant with
Rabah (in 1986–87), the neighbors told her that there was a Kurdish sheykh in the neigh-
borhood who wrote hujub: “I went to him and he made a hijab for me. He put a lock [qufl]
with an elastic band around my belly and he closed the lock. Thus the baby would not
die. The sheykh forbade me to attend any ajir [sitting for the dead] or to go to the cemetery,
because going to an ajir or a cemetery would break the hijab and the baby would die. I
delivered Rabah” (December 2007).
Two years later, Lamis gave birth to Shadouiya. She had not seen al-Qireyne during
the pregnancy, even though she had not taken any similar precautions. For this reason,
Lamis thought that she was rid of al-Qireyne. However, she shortly became pregnant
again, and as she was in the fifth month, “I saw war in my dreams, some people attacking
me and trying to take a baby from me. They were pulling it from me and me from them
[henn yeshiddo wa ana ashidd]. Thereupon I woke up, found that the baby was dead. They
took me to the hospital. It was a boy” (December 2007).
Lamis did not get pregnant again for the next five years. With the cessation of hostili-
ties in Lebanon in 1990, she, Khaled, and their three young children relocated to Tyre.
For a while they lived in a small house, in Al-Bustan, belonging to a sister of Lamis’s who
had emigrated to Germany. If anything, Palestinians became even more vulnerable
socially, politically, and economically with the return to civil peace in Lebanon. The soft
violence exerted against the refugee community in this period—in particular through the
strict application, and the reinforcement, of the administrative apparatus excluding Pal-
estinians from the labor market—is dramatically reflected in Lamis and Khaled’s tragic
circumstances in those years:
Lamis was pregnant at the time, and she saw al-Qireyne one last, dramatic time:
I went to a sheykh in al-Bass and he made a hijab for me. He said that I must not go to
places where there are dead people or a cemetery, nor step on water that flowed from a
dead body being cleansed. I also went to an old woman who made a lock for me. Then my
husband died and I was pregnant with twins, a boy and a girl. I forgot what the sheykh had
told me and I attended the funeral. The boy died but the girl lived. It was because of al-
Qireyne. I saw my husband coming and taking the baby from me. The day after, I woke up
and said that the baby within me was dead. They took me to the doctor and he did not know
that I had twins. He did not see that one baby was dead. When I delivered, the boy was
dead, and Mirwat, the girl, was alive. . . . The Qireyne that I have goes against boys, not
girls. (December 2007)
In the ten years since Khaled’s death, Lamis’s woes have abated somewhat. Neighbors
joined forces, in a discreet but decisive manner, to make sure that she and the children
would remain good-standing members of the hara (neighborhood). Four years before our
first interview, ‘Abir married Muhammad, a cheerful young man from dar Abou Rizq at
the end of the alleyway; they had had a three-year-old son. They lived on the outskirts of
Tyre but visited Lamis almost daily. She took pride in the self-discipline that she nurtured
her children with, and in her efforts to grow them out of the environment of numbing
harm they grew up in: “I don’t like to lower their morale, to weaken them, I like to make
them stronger . . . from nothing I brought them up for ten years: I made a house, I got
them furniture, I got a sofa for them, a room for them to sleep in, I got a computer for
him [Rabah], I clothed them, I fed them. All this, it’s strength. And me, same thing. I
make them walk on this path, that they be strong, look with hope and optimism [yakouno
qawiye yanz.aro bi-amal tafaul].”
15 2 • SYLVAIN PERDIGON
T H E Q U E S T F O R S A N I T Y, B E T W E E N T H E L I V I N G A N D T H E D E A D
Lamis’s account might suggest at first sight that she is focusing on the events of al-Qireyne
targeting specially male offspring to deflect doubts about her (and her mother’s) ability
and commitment to fulfill a tightly defined female mandate to produce male offspring for
the continuity of a social order that places women in a position subordinate to men. In
this vein, Janice Boddy writes in her study of the zar cult in Sudan that “possession lifts
from [the woman’s] shoulders a measure of the responsibility for social reproduction she
is continually schooled to accept via the process of socialization” by redirecting the failure
or delays in fulfilling this mandate to “a transcendental third, the zar, which replaces
gender discourse as the current locus of meaning” (Boddy 1989, 189–91).
I agree that this type of analysis captures part of the truth some of the time, including
in Lamis’s case, but it still falls short on a number of counts. Most important, for me, it
seriously underestimates the power of the oneiric images in which al-Qireyne manifests
itself to not only symbolize, but indeed to effect, actual change in this world. I do not
intend here to engage the question of the ontological reality of the imaginal, which I am
in no better position to assert than Boddy and others who have written on spirit posses-
sion. Rather, I am referring to the power of al-Qireyne, in its immediate aspect of dream
images, to enter into a plurality of semiotic processes so as to thicken the spaces of con-
nectivity through which the subject is tied to others and to the world. In this regard, I
further want to suggest that an account such as Lamis’s should not be framed just as a
“counterhegemonic” expression of “resistance” to, and “consciousness” of, female sub-
ordination (Boddy 1989, 341–48), but rather that it bespeaks a more inclusive quest for
sanity. With this vocabulary, I think specifically of Susan Wolf’s gloss of the desire to be
sane as “not a desire for another form of control [but] rather a desire that the self be con-
nected to the world in a certain way—we could even say it is a desire that one’s self be
controlled by the world in certain ways and not in others” (Wolf 1987, 55, quoted in Asad
2003,73). I also seek to attend, if obliquely, to Lamis’s self-avowed struggle with “nerves”
(a’ssab), and to the sense pervading her account that she brought children into a mad
world—a world in which three times in a row she left her house to return to a pile of
debris; where she found herself a “guest” (dayf) for five full years; where her refugee
husband’s capacity to make a living was severely restricted by law—a world, that is, that
long seemed to reject or even actively cut ordinary connections.
In her accounts of al-Qireyne’s attacks on the womb, we see a series of unruly signs
and interpretive moves where a woman is never entirely certain of the exact meaning of
the dream or the experience of suffocation or of what in her own actions might have
triggered al-Qireyne to act in this vengeful manner. Instead of a sovereign subject who
can impose meaning on her experiences, we see a subject being born, in part, through
the encounters with these signs that are remarkably domineering and unruly.
At the simplest level of interpretation, one might say Lamis comes to attribute the loss
of her pregnancies to al-Qireyne (“I have/had al-Qireyne”) because fragments of a semiotic
15 4 • SYLVAIN PERDIGON
extraordinarily condensed motif evidently brings together al-Qireyne and al-rahim, but in
a specific fashion that deserves minute attention. I want to argue against the temptation
of resorting to a ready analytical template that would suggest that the motif exhibits the
properties of a somehow traumatic image: that we can take for granted an indexical rela-
tion of contiguity, for example, between Lamis’s unsettling dream and the event of Kha-
led’s death. I think we must also resist the idea that Khaled’s dreadful action in the dream
was an expression of some deep-rooted, ambivalent feelings Lamis would have harbored,
and repressed, toward him. The dream does have these properties if we privilege a semi-
otic ideology of the imaginary that makes the modern, secular self the ultimate source and
referent of its own oneiric experience. But Lamis inserts this dream in the series of her
encounters with al-Qireyne, and in doing so, she also draws a very different set of connec-
tions. Her statement “It was because of al-Qireyne. I saw my husband coming and taking the
baby from me” expresses a specific kind of seeing. “Al-Qireyne” functions here as a shifter
that both indicates and, perhaps, opens up the rule of use of the image seen. In this con-
text, it specifically underscores, I believe, the divorce or disjunction between the indexical
and iconic properties of the motif—that is, between the two different modes by which the
dream image relates to the world. I said earlier that for my interlocutors, the actual forms
in which al-Qireyne manifests herself seem to be largely a matter of cruel whim on her
part, but her appearance in a dream attests to her ability to effect changes in the world.
Thus the imagery of al-Qireyne enables semiotic processes in which contextual (here
causal) contiguity operates independently from resemblance or similarity. It makes it pos-
sible for al-Qireyne to mediate, in this case, a disjunctive relation between the memory of
a dearly beloved departed relative and the evil content and significate effect of the dream.
I do not want to imply that as a result the motif is voided of all iconic power. But iconicity
operates in a concurrent place of its own, further determined, it seems to me, by contex-
tual elements extraneous to the dream situation proper. There is the fact, of course, that
the reference to “my husband” in the dream is also a reference to the father of the child he
carries away. There is also the later revealed circumstance that Lamis was pregnant with
twins, and thus that Khaled had left one of the two children, Mirwat, in the mother’s care.
As indicating the presence of al-Qireyne in the scene of devastation, the dream image is
that of a killing. As the icon of a husband gone before his time, the dream is a mournful
scene of parting that also bespeaks the tenacity of a bond between the dead and the living.
CONCLUSION
There is another thread in Lamis’s account, one that concerns the devastation of refugee
lives exposed to constant abuse from war, homelessness, and destitution. Lamis claimed,
quite convincingly to me, that it is al-qahr—the throes of degradation, the humiliation of
homelessness, hospitality, and unemployment—that killed Khaled before al-Qireyne took
over his physiognomy and carried off his unborn child to the realm of the dead. And
although Lamis’s miscarriages were bound up with her oneiric life, she also pinpointed,
N OT E S
15 6 • SYLVAIN PERDIGON
4. “[The schema] represents an encounter between an individual whose psycho-somatic
structures are situated predominantly at the level of need, and signifiers emanating from an
adult. Those signifiers pertain to the satisfaction of the child’s needs, but they also convey the
purely interrogative potential of other messages—and those other messages are sexual. These
enigmatic messages set the child a difficult, or even impossible, task of mastery and sym-
bolization and the attempt to perform it inevitably leaves behind unconscious residues”
(Laplanche 1989, 130).
REFERENCES
Asad, Talal. 2003. Formations of the Secular: Christianity, Islam, Modernity. Stanford, CA: Stan-
ford University Press.
Boddy, Janice. 1989. Wombs and Alien Spirits: Women, Men, and the Zār Cult in Northern Sudan.
Madison: University of Wisconsin Press
Canaan, Tawfic. 1927. “The Child in Palestinian Arab Superstition.” Journal of the Palestine
Oriental Society 7 (4): 159–86.
Corbin, Henry. 1976. Mundus Imaginalis, or the Imaginary and the Imaginal. Ipswich, UK:
Golgonooza Press.
Das, Veena. 2007. Life and Words: Violence and the Descent into the Ordinary. Berkeley: Univer-
sity of California Press.
Drieskens, Barbara. 2008. Living with Djinns: Understanding and Dealing with the Invisible in
Cairo. London: Saqi.
Fassin, Didier, and Richard Rechtman. 2009. The Empire of Trauma: An Inquiry into the Con-
dition of Victimhood. Princeton, NJ: Princeton University Press.
Fischer, Michael M. J. 2007. “Epilogue: To Live with What Would Otherwise Be Unendurable:
Return(s) to Subjectivities.” In Subjectivity: Ethnographic Investigations, edited by Arthur
Kleinman, João Biehl, and Byron Good, 423–46. Berkeley: University of California Press.
Laplanche, Jean. 1989. New Foundations for Psychoanalysis. Oxford: Basil Blackwell.
———. 2005. Essays on Otherness. London: Routledge.
Peteet, Julie. 1991. Gender in Crisis: Women and the Palestinian Resistance Movement. New York:
Columbia University Press.
Povinelli, Elizabeth. 2001. “Sexuality at Risk: Psychoanalysis Metapragmatically.” In Homo-
sexuality & Psychoanalysis, edited by T. Dean and C. Lane, 387–411. Chicago: University of
Chicago Press.
Povinelli, Elizabeth, and Kim Turcot DiFruscia. 2010. “Shapes of Freedom: A Conversation
with Elizabeth A. Povinelli.” Altérités 7 (1): 88–98.
Sahlins, Marshall. 2013. What Kinship Is—and Is Not. Chicago: University of Chicago Press.
Sayigh, Rosemary. 1994. Too Many Enemies: The Palestinian Experience in Lebanon. London:
Zed Books.
Wolf, Suzan. 1987. “Sanity and the Metaphysics of Responsibility.” In Responsibility, Character,
and the Emotions, edited by F. Schoeman, 46–62. Cambridge: Cambridge University Press.
Much recent and long-standing work in the anthropology of biomedicine has critically
engaged the power of biomedicine to reshape responses to illness and suffering. Cri-
tiques of medicalization, however, have had a tendency to privilege the very vocabularies
of biomedicine and public health that they seek to dislodge, even as scholars recognize
that aspirations for recovery and the quest for cure are also given expression through a
range of vocabularies available in contemporary social life, and that the techniques to
manage the population have differed across contexts, as our discussion of Foucault and
Canguilhem in the introductory concept note shows. Curiously, while studies of bio-
medicine have increasingly challenged the doctor–patient relationship as the privileged
site to study medical intervention and therapeutics, the clinic itself continues to be taken
as a stable entity primarily studied in terms of the production of medical knowledge and
authority.
The following ten chapters not only unsettle the boundaries between medical, legal,
and pharmaceutical spaces but also ask, What social forms do aspirations for justice and
recovery take? How are affliction and suffering enfolded in complexes of institutions,
what is the labor entailed in the quest for cure, and who or what is to be recovered? The
collective accomplishment of these chapters is that they show the ways in which
responses to pain might be made possible in institutional complexes, while also illumi-
nating the contradictory experiences of the social institutions of law and medicine by
those living in wounded worlds.
The first set of chapters, by Sophie Day, Julie Livingston, and Jonathan M. Metzl (chap-
ters 8, 9, and 10, respectively), invite us to rethink both the clinic and psychiatric knowl-
edge in terms of the affects surrounding care, disease, and violence. In her chapter “Wait-
ing and the Architecture of Care,” Sophie Day (chapter 8) takes the quotidian experience
of waiting as the entry point to explore the tensions of subjection and citizenship attached
to the U.K. National Health Service at a time when its very existence is in question. The
NHS is a key site for polemics over the inefficiency of an overcentralized bureaucracy,
crystallized in the notion of waiting. Focusing on the experiences of patients and staff
in cancer-care services, however, Day subtly shows how waiting produces fleeting
moments of noticing and responsiveness as staff, alongside patients, experience being
caught within a “system” even as the impersonality of bureaucracy protects staff against
the claims of patients. Scholars have noted that the idea of abstraction and the notion of
equivalence are integral to the modern liberal state and that they rest on uncertainty; as
such, suspicion suffuses the space between law and its application (Asad 2004). Day,
however, demonstrates that abstraction and substitutability can create a feeling of safety
and trust, albeit one that is “inhuman.” Drawing upon factorylike images, such as the
conveyor belt, that permeate patients’ talk of their treatment, Day fascinatingly highlights
REFERENCE
Asad, Talal. 2004. “Where Are the Margins of the State?” In Anthropology in the Margins of the
State, edited by Veena Das and Deborah Poole, 279–88. Santa Fe, NM: School of American
Research Press.
Sophie Day
The U.K. National Health Service (NHS) provides universal care that is free at the point
of delivery to the vast majority of residents. Traditionally, it supplied well over 90 percent
of the services in the country, topped up with private care that is concentrated in London
and other urban centers. Since the 1980s, a raft of reforms has introduced markets and
new management, accelerating dramatically with the 2012 Health and Social Care Act.
NHS markets will be open to all “qualified” or “willing providers” from 2013, and public
organizations will be able to raise funds in the same way as the private.1
In this moment of turbulence, the NHS attracts intense public concern in the media,
in parliamentary debates, and during street protests. In the 2012 summer Olympics,
Danny Boyle’s opening ceremony depicted the NHS as a symbol of the best of the nation,
which attracted commentary on the efficiency, sense of fairness, and equality of the NHS,
and also on the patriotism of service, associated with the war dead in whose memory we
came together to pool social risk and give citizens equal access to what was theirs by
right.2 Post–World War II, Britain and other governments systematically turned to the
reduction of inequalities between rich and poor, the redistribution of purchasing power
through wage policy, and an expansion of public services. In this story of collaborative
rebuilding, we were privileged to pay the taxes that would permit such a future, and
rationing, notably of food, was a way of ensuring something for everyone, now and in the
future. Danny Boyle’s vision of sentimental domesticity, unquestioned and undifferenti-
ated belonging to the nation epitomized by an NHS, had a sharper edge. It asked whether
this future has gone. Did unique wartime destruction provide the only galvanizing force
167
capable of such radical redistribution, and will continuing austerity dissolve the last
remaining commons in the United Kingdom? At present, it is impossible to know
whether the NHS was dissolved when “providers” and “purchasers” were formally seg-
regated under Thatcher’s government during the early 1980s or when the 2012 legisla-
tion required competitive tendering for services; it is impossible to know whether the
NHS still exists and what the tipping point will prove to be. Now, we wonder if the post-
war achievements were exceptional and, once gone, will be lost forever.
Simultaneously, the media have been full of the real-time inequalities and failures of
service experienced by those requesting care. They contemplate dying as you wait for a
response, and the arbitrary rationing of life and death. Reports and fictionalized stories
about the impossible inefficiencies of an overcentralized bureaucracy, by far the largest
employer in the United Kingdom, display the worst of the nation: the lack of care and
recognition that serves only to confirm patients as alienated and subordinated subjects
of an overweening state. This chapter asks how the NHS attaches a sense both of citizen-
ship and of subjection, recognizing one who belongs “cradle to grave” alongside the
demeaning humiliation of a claimant, often at one and the same time. It probes the
nature of an “untenable hyphen” that links and separates nation and state (Aretxaga
2003), citizen and subject, by exploring the topic of waiting.3
The NHS wait is visible to all and is one of the most prominent topics of complaint.
Newspaper, radio, and television coverage anatomize the waiting for a referral or an
intervention, unnecessary delays and government targets, average waits by region and
waits on-site—to register your position in a queue, to see the health-care worker, to
obtain results and drugs, to receive a letter or another appointment. Waiting lists, waiting
rooms, and queues aggregate people in ways that can seem archaic by contrast with less
visible or fast-moving queues online, in games, and during other forms of play. For the
supplicant, waiting is dead time, a form of entrapment that accentuates inferiority and
steals away your life, while, for managers, it can be counted and audited in the way of
other commodities. In all its negative forms, waiting is associated with the “other” side,
as in Churchill’s well-known observations about queuing and the Cold War divide and
more recent anatomies of the end of socialism. Everyone apparently considers waiting a
bad thing, and many anticipate that waits for health care will soon belong to the past.
Some consider that waiting will be dissolved through market mechanisms such as pric-
ing that mediate supply and demand in alternative ways. It is also possible, however, that
the end of waiting will empty out or eviscerate the NHS.
Waiting has been considered definitional of the worst aspects of bureaucracies, but I
shall suggest that it is more than simply a refusal of hospitality or service. Times, I sug-
gest, are not simply emptied and stolen. On the contrary, ordinary processes of bargain-
ing with what there is (Berlant 2008; Das 2007) build an uncomfortable apprehension
of the hyphen between belonging and subjection, the triage of equivalence and equality,
and the improvisation of forms that have paced gender and generation, class and race,
in specific ways through the NHS over the past seventy-five years.
A N T H R O P O L O G I S T A S B U R E A U C R AT: W O R K I N G W I T H T H E N H S
My earlier research in this NHS Trust began when I joined the sexual-health clinic in 1986.
I had an honorary contract that allowed me to see patients and their medical notes. I was
to follow standard protocols and liaise closely with other staff, and, with time, I realized
that our work fell well within the range of NHS service work and research. I described
some of the standard procedures and spaces in the traditional chapter 1 of my monograph
On the Game, and discussed the difficulties of separating research from a politics of
domination, continuing practices of medicalization, and an often-invidious set of conven-
tions for displaying and narrativizing the self (Day 2007). I was unable to explore relations
between patients and staff in greater detail and felt dissatisfied with this framing.
As indicated, health care has changed in the last thirty years. Markets have been cre-
ated within the NHS, investment has been followed by disinvestment, and administra-
tors largely responsible to clinicians have been replaced by an extensive structure associ-
ated with the ethos and practices of a widespread new public management in place of the
previous and more minimal bureaucracy. This new, entrepreneurial governance favors
competition, choice, decentralization, and various preferences for participation and the
market mechanism.5 In consequence, strategic direction can look like a race for ghoulish
business and profits, as distasteful as the previous procedural form.6 Nonetheless, mar-
ketization persists in place of the previous impersonal, bureaucratic “paradigm that
PAT I E N T S ’ E X P E R I E N C E S
The waits are of many kinds. Even physical waiting rooms differ from one another. You
can simply turn up and wait to be seen at the sexual-health clinic I knew in the 1980s,
although most outpatient clinics run an appointment-based waiting list. Other spaces
such as the chemotherapy units we observed in 2012 are rooms for treatment as well as
waiting. In some clinics, patients take numbered tickets as place markers of the ordinal
sequence; in others, they rely on receptionists to use their medical records to mark the
order in which they registered. Inpatients will wait for medication, food, or ward rounds,
pushing a bell or calling out for attention at other times. Many people wait in one place
and then another: perhaps you wait to have your bloods taken, to see an oncologist, for
your prescription to be filled in the pharmacy, for a chair in the chemotherapy suite, and
still get out within the day. You might also do all this work and leave empty-handed, with
a new appointment on the horizon.
Waiting was not differentiated strongly from the usual bureaucratic inefficiencies:
delays, lost notes, missing letters, nonexistent appointments, unsigned prescriptions,
and incorrect treatments. Staff, students, patients, companions, and others such as hos-
pital visitors complained about these issues in very similar terms. But for patients, wait-
ing often served as a cover term for their problems, and it also carried a sense of expecta-
tion, an orientation toward the impossible fantasy of finding someone who would take
responsibility for your care and prevent or solve these problems in the future, a person
who might also be thinking about you in between visits.
Helen Ward and I were asked to feed patient voices into a meeting evaluating services
17 0 • SOPHIE DAY
for all staff in cancer-care. We spoke of “staff versus the system,” in keeping with several
other accounts. Michael Herzfeld, for example, drew attention to practices of reification
where the “system” appears to be an impersonal force on which you can blame all sorts
of things, whether you are an official or a supplicant (1992, 147–48). It is the system that
is to blame, and functionaries commonly wave vaguely in the distance as they blame
another department or the system in general. As Herzfeld emphasizes, there is no dis-
embodied bureaucracy in reality, and bureaucrats are not really a race apart, so we must
see this characterization as a cliché requiring analysis. Appropriately, Herzfeld notes that
managers travel in a different direction; they find fault in and replace their personnel,
thus reproducing the tyrannies of the system as a whole. Patients, however, distinguished
health-care workers from managers and the front line from backstage. Scarcely did we
hear a negative comment about any frontline, flesh-and-blood person.
The problems experienced were real enough. Transport could create insuperable hur-
dles. A woman waited with her husband and her niece as he had his chemotherapy;
somehow or other they were to come fourteen days in a row even though he could not
use public transport and the hospital no longer permitted the chemotherapy unit to sort
out hospital transport. A separate department assessed and organized the coming and
going. In another chemotherapy unit, a woman was supporting her mother. When they
last came, she had contacted Transport to help travel from the hospital entrance along
the many corridors. Two hours of waiting later, she simply stole a wheelchair and brought
her mother herself. New arrivals never knew about the reduced-fee or free car parking to
which they were entitled and were liable to experience the indeterminacy of waiting, not
knowing what had happened, what might happen, and what should happen, as a ticking
of the parking meter.
As one young man said, in reference to his father, who had visited all the sites within
this hospital group, “[M]ost of the waiting is unwarranted; it is the same wherever you
go.” It cost him a day of paid work each visit, since he drove his father to and fro. Father
and son talked me through various stories about bloods and pharmacy.
The son began, “If you have bloods at 9:00 and see the doctor at 9:30, you should get
your chemo by 12:30 but it can be 2:30. At the site [my father] usually attends, it doesn’t
always matter as they [the nurses] will stay back till 7:00 if there is a problem. They get
paid but, you know, it’s not all finance—they have dinners to get and families to see.
Here, you stop at 5:00 p.m. and so it will now make a big difference whether he needs
one bag [of blood] or two.” If it were the latter, this man’s father would not get his treat-
ment and would have to come back. I asked how they knew what was happening and the
father responded, “They just tell you it depends on the queue. That’s the nurse who will
say that. They say it depends on how many there are in front of you but they don’t know
the answer. If you get through to the pharmacy, they say either we haven’t had the fax
or we just got the fax.” As he quickly confirmed, “No one wants to admit they made a
mistake or that something went wrong so you just never know when you’ll get the chemo
or the blood.”7
17 2 • SOPHIE DAY
Waits in the form of queues have been described as property claims. Marilyn Strath-
ern asked about legal precepts of property in Sharing, Stealing and Giving Simultaneously
(2009), referring to Kevin Gray’s suggestion that queuing does the work of property
(Gray [2007] 2010).8 Gray emphasizes the significance of the ordinal sequence; only the
order of arrival matters through a rule of first possession that involves the commoditiza-
tion of time.9 “First come, first served,” however, also creates a sense of persons of poten-
tially equal worth regardless of connections and status. Insofar as the queue holds for-
mally equivalent units in order, Gray sees a property form akin to estates (from the Latin
stare, “to stand”) as they are held and distributed each generation (Gray [2007] 2010,
176–78).
Several patients asked whether delays would affect the course of a cancer that would
not wait. The woman cited above, whose husband could not use public transport, saw
their current situation in the context of previous delays. After initial surgery and treat-
ment, she said, “we went afterwards for regular appointments but they stopped suddenly.
We thought, ‘Well, he is better; there are no more appointments, maybe everything is
OK.’ ” When her husband developed symptoms, they returned to the doctor, who said
simply, “Why didn’t you come before?” A year had gone by and the doctor checked his
computer, confirming that a letter had been sent. “You know, no letter ever arrived. We
might have got it earlier if we had been followed up,” and, she added, they might have
avoided another operation and the next course of treatment that apparently cured one
side; this year, it was the turn of the other side.10
The nonarrival of a letter seared into the memory had made all subsequent delays a
concern and promoted doubts about treatment. This current round had begun after
another, shorter delay when the doctor was on holiday. When he returned, he had insisted
they attend straightaway, to have an operation at once. Would her husband ever eat
again?
An elderly woman told me she was only just out of hospital; she had been an inpatient
for a week. The story featured a stent of the wrong size and letters that did not arrive,
along with appointments that were promised but never made. It was clear to the doctor
and patient early in 2012 that the stent should be replaced with a smaller one. But a stent
of just as large a size was substituted even though, she said, “I was getting problems. I got
problems again, the same infection, and I am a bit cross about that.” Once inserted, it
proved difficult to correct the procedure. Eventually, this woman took herself to the hos-
pital doctor, who said he would change it. This was the beginning of June. The doctor said
he would do the operation in July or early August. “I heard nothing. . . . I got my [routine]
appointment in October. [By this time] the infection was very bad, whizzing around my
blood, and I said to the doctor, ‘I never heard from you.’ ” She described the shock of her
time as an inpatient: “I did stay in one night that first time as I live alone [that is] when
they put back the big stent, not the smaller one.” This time, however, she was taken to
theatre at 10:00 p.m. from a ward with elderly and very sick patients. Her neighbors could
not get out of bed at all, and she soon acquired a sense of her own mortality, having never
17 4 • SOPHIE DAY
nonexistent appointments, unsigned prescriptions, hospital information technologies
that were not integrated across sites and more—every individual to whom we spoke
commented on staff in glowing terms. They spoke of excellent care, the best hospitals,
long-suffering and harried workers handicapped by a dysfunctional administration, con-
stantly required to work harder and therefore too busy to attend to patients. My most
constant interlocutor had said the first time we met, “The main thing that needs to hap-
pen is that the system has to be changed. . . . It is all very, very difficult, even though the
staff are fantastic.” This was the theme reproduced in subsequent conversations with
patients in both chemotherapy units.11 Conversations were structured in similar ways,
and they generated an emphasis on the uncommon kindnesses, the admirable skills, and
the excellence of care on the part of individual staff within the pervasive structural vio-
lence that was the “system” (Graeber 2006, Gupta 2012).
This theme—staff versus system—was neither abstract nor clichéd. It came to life as
patients described particular incidents: a woman spoke with gratitude of a nurse who,
beyond the call of duty (at least in the patient’s view), helped her fill in forms that might
allow her to carry on living alone with some social support; another concluded a complex
story simply, with the words, “I cannot fault the service they’ve given me.” Such appre-
ciation related to many different aspects of care. For example, I was struck by the com-
ments of a woman on her own who had waited full of anxiety about her first treatment
of chemotherapy. Telling me her story, she stopped and emphasized, “Best of all, they
realized that my English was poor. They spoke slowly. The doctors speak nicely.” Some-
one had given her a leaflet in Urdu for reference, and in recollecting this recognition of
her situation, this humanity, her face lit up.
A couple I met in a diagnostic clinic in Cancer Services told me how worried they
had been and how worried everyone was at home. The test results took so long to come
back: “But,” they paused, “all is well,” and there was nothing more to say. “She,” said the
husband, “was treated like a queen, no, like a small child.” His eyes shone; he smiled.
“It would be too much to complain about anything. That wouldn’t be fair; it would be
selfish.” The man struggled for the English words: “It made us proud to be in the U.K. It
was, even, they did extra things. Like, it was not his duty, the doctor, when there wasn’t a
chair for me to sit in, and he went to bring a chair, the doctor. They even did these extra
things.”
The waits were nothing by comparison to this kindness. Many of the individual acts
that patients noted might appear mundane and were in fact routine. But the surrounding
chaos, in which staff were caught alongside patients, drew attention to these events and
rendered them extraordinary.12 Personal attention from health-care workers, and espe-
cially a response attuned to the details of your life and situation, stood out in this environ-
ment, whether it was the language you spoke, the anxiety you felt in waiting, or the paper
forms that had defeated you.
Care in waiting encompassed relations among patients, too, often fleeting and worry-
ing, but constitutive of the business of noticing. Some patients may talk too much or
WA I T I N G I N P U B L I C
Mapping the complex pathways for cancer care before our service evaluation, I was invited
to sit with oncologists in their clinics. I was puzzled by the comments one woman made
about how she had returned to the NHS after experiencing private health care, which is
growing in London and includes various services that were not previously covered by
insurance. This woman was attending the clinic four years after her diagnosis, and the
doctor wanted to discharge her. They reached a compromise with one further visit
planned in a year’s time. She turned to me to explain: “I always come here. I don’t go
privately, I don’t trust them. I tell all my friends to come here. My one friend died; she
went privately. . . . [Here, in the NHS hospital] it is like a conveyor belt. No one talks to
you for six months. You have this medicine and that surgery, this treatment and then
that. It is hard to remember it all, and you are just on a conveyor belt. Then, after six
17 6 • SOPHIE DAY
months, it is all explained. It is safe. I would never go anywhere else. I come here for my
[continuing] treatment. I know everyone now.”
This conveyor belt of treatment was associated with a positively evaluated lack of com-
munication, an inhuman but also safe form of therapy. She continued: “They do it all for
you; you don’t need to think. You are like a robot as you go through the system. And even
though no one examines you for months, this is this, this is that—it’s all in the right
order, it is all good.” She attributed a sense of safety to the number of staff involved who
knew what they were doing. One was equivalent to another; they were somehow stacked
up, always ready for substitution. If you didn’t see the doctor you met last time, a replace-
ment appeared. He or she might be a junior rather than a specialist, but they were
answerable to each other, and a junior could always find a senior to advise. At the time
of our conversation, she was meeting the doctor for only the second time in these four
years and had to hope that the infamous system of notes and computer screens would
ensure some temporal continuity from her last visit. I never discovered what had hap-
pened to her in private care.
This conveyor belt, known as the care pathway, was neither pleasant nor easy. In addi-
tion to the scarcely tolerable treatment, patients fought to register their own individual
and unique attributes. At its simplest, you had to think what to do when someone left the
waiting room ahead of you even though they had arrived later. But you also had to be
generally attentive to ensure that you were not mistaken for someone else. You had to
work hard at your own reassembly when, for example, medical notes recording your own
particular history went missing or when two tests gave apparently inconsistent results.
You had to persist when the doctor insisted that your symptoms were due to a cold since
the treatment did not, in theory, cause such effects. The vignettes presented suggest that
patients railed against a bureaucratic logic of equivalence and substitution applied to
their own conditions and epitomized in the wait. They fought against impersonal norms
of the average, typical, or normal applied to the patient body. Nonetheless, they consid-
ered this very same logic to make for safety, for a positively evaluated conveyer belt, when
applied to staffing.
Like patients, clinical staff both resisted and welcomed the factorylike features of the
NHS. Although it is beyond the scope of this chapter to address staff perspectives in any
detail, it is important to recognize the symmetry associated with my suggestion of com-
mon property rights. Like the patient cited above, frontline staff also contrasted public
and private practice; this contrast is a core feature of NHS hospital spaces as well as a
means of discriminating between sites. Senior clinical staff in London often combine
private practice with an NHS post. Note the voices raised against bureaucratic indiffer-
ence in a recent consultation as staff complained about redundancies, the loss of secre-
tarial support, and staff shortages. Incomprehension greeted the apparently rational solu-
tions to cuts such as the savings introduced by sending all letters dictated in clinics to
India for transcription—an innovation associated with patient complaints about delayed
Marx, in his 1875 Critique of the Gotha Programme, asks what is fair. What might an equal
right or equivalent be other than a measure of commodity exchange? “The exchange of
17 8 • SOPHIE DAY
equivalents in commodity exchange exists only on the average and not in the individual
case,” he writes. It is the measurement of abstract labor that produces equivalence: “The
right of the producers is proportional to the labor they supply; the equality consists in the
fact that measurement is made with an equal standard, labor.” This notion of average
measure and equivalence is contrasted with equality:
But one man is superior to another physically, or mentally, and supplies more labor in the
same time, or can labor for a longer time; and labor, to serve as a measure, must be defined
by its duration or intensity, otherwise it ceases to be a standard of measurement. This equal
right is an unequal right for unequal labor. It recognizes no class differences, because
everyone is only a worker like everyone else; but it tacitly recognizes unequal individual
endowment, and thus productive capacity, as a natural privilege. It is, therefore, a right of
inequality, in its content, like every right. Right, by its very nature, can consist only in the
application of an equal standard; but unequal individuals (and they would not be different
individuals if they were not unequal) are measurable only by an equal standard insofar as
they are brought under an equal point of view, are taken from one definite side only—for
instance, in the present case, are regarded only as workers and nothing more is seen in
them, everything else being ignored. Further, one worker is married, another is not; one
has more children than another, and so on and so forth. Thus, with an equal performance
of labor, and hence an equal in the social consumption fund, one will in fact receive more
than another, one will be richer than another, and so on. To avoid all these defects, right,
instead of being equal, would have to be unequal. (Marx [1890–91] 1999)
This distinction between equality and equivalence points to the impossible situations
our interlocutors described and lived as substitutable individuals, so uncomfortably expe-
rienced through bureaucratic encounters of all kinds, alongside the care taken and
shown among those unique persons present to each other. Waits assemble forms of
equivalence comparable to those expressed in the language of rights and duties among
citizens. They also allow for and positively generate practices of equality—that is, a
response to what is needed or wanted. This contrast is captured by distinctions in public
health between equal rights to care and the care appropriate to different needs or possi-
bilities: everyone has the right of access to a primary-care physician, for example, but this
doctor will respond differently to the needs presented. In this context, Marx’s commen-
tary evokes Aristotle’s distinction between the equal treatment of equals and the unequal
treatment of unequals.15
Waiting constitutes one prospective view of triage, which exceeds the linear order of
a queue (ordinality) in processes that rearrange and sift the assembly (triage, trier: “to
separate, sift, select”).16 If no one much enjoys that strange legal subjectivity of being
substituted for or considered equivalent to another, the wait nonetheless elicits a response
and attentiveness that amounts to a process of focusing or differentiating—that is, a
triage of the potential or transitional space of the generic.17 Triage involves active calibra-
tion and commensuration across the hyphen between equality in the sense of sameness,
CONCLUSION
Waiting only recently became associated so closely with queuing. The waiting room dates
from the 1680s and the waiting game from 1890. The waiting list is recorded from 1897,
although its connotations of a delay endured, and an expectation unfulfilled existed ear-
lier (Shorter Oxford English Dictionary 1980, s.vv. “wait,” “waiting”). In Middle English,
though, via German roots, waiting was an active process of watching, guarding, and being
awake, of looking on, visiting as well as spying, in uses such as the ambush or trap asso-
ciated with lying “in wait.” Moreover, we can wait on (attend, assist, attend to, and serve)
those who present themselves without any of the contemporary connotations of subser-
vience, especially in highly valued public and religious service.
I have presented waiting as a material occupation, a stranger sociability (Berlant 2008;
Vogler 1998; Warner 2002), and recognition of the care claimed and given that defines a
public to which you belong. I have shown, too, the tensions within such a public, since
participants consider that the NHS belongs to them while, at the same time, they are
defined, contained, and put on hold by “the system.” If this material is convincing, then
the end of waiting, universally seen as a positive outcome, might have unanticipated
effects on the care that the NHS can deliver. Those who wait and those who wait on (or
attend) sometimes become attuned and learn to be affected—that is, to care (Despret
2004, 131). A politics of care animates social contracts among strangers, and U.K. resi-
dents associate this vitality with “their” NHS specifically, whose values and practices pro-
duce the hyphen between nation and state, citizen and subject, equality and equity.
18 0 • SOPHIE DAY
NOTES
1. The details are widely available; see, for example, the site set up by the British Medical
Journal at http://journals.bmj.com/site/nhsreforms/index.xhtml. They also change rapidly:
the fieldwork reported here and the writing of this piece took place in 2012.
2. For examples of this coverage, see Tim Stanley of the Telegraph (July 28, 2012), Polly Toyn-
bee of the Guardian (July 30, 2012), and blogs and commentaries such as those at www.politics
.co.uk/comment-analysis/2012/07/30/comment-the-politics-of-the-opening-ceremony and www
.opendemocracy.net/ourkingdom/sunder-katwala/island-story-boyles-olympic-opening-was-
irresistibly-british (accessed December 7, 2012).
3. Begoña Aretxaga suggested that “one should consider a variety of relations that are
ambivalent, ambiguous, hostile, violent, porous . . . in which the nature of the hyphen [between
state and nation] is more a cipher than a self-evident reality” (2003, 398).
4. This research was funded through the National Institute for Health Research Imperial
BioMedical Research Centre with approval from the NHS Health Research Authority (NRES
committee London—City & East). I should like to acknowledge in particular Helen Ward’s
contributions to my account of our work. We are grateful to colleagues in the NHS Trust and
University for supporting the research, and especially to patients affected by cancer who have
enabled us to understand the dense fabric of waiting in the NHS. Participants at a Sussex
University anthropology seminar (2012) and through joint research on numeracy (with Celia
Lury and Nina Wakeford, 2011–14) have contributed to the development of my argument, and
I would also like to thank Victoria Goddard and Jonathan Weber for comments on an earlier
draft of this chapter. The following pages do not address my earlier research directly, since the
peculiar stigma attached to sex work in the United Kingdom makes NHS waiting for them
highly particular. Nor do I discriminate between the different forms of waiting in a queue, in
a room, at a distance, and so forth, although I hope to do so elsewhere.
5. Ten essential principles are listed by David Osborne and Ted Gaebler (1992, 19–20, in
Paul du Gay 2000).
6. I am referring literally to markets in life and death, although I borrow the term from
Elizabeth Povinelli (2006).
7. Vignettes are not reported verbatim but are taken from my notes of informal conversa-
tions and interviews.
8. Gray’s 2007 paper was published in 2010.
9. Given this commoditization, it is widely noted that many poor people earn a salary by
waiting and queuing on behalf of the wealthy.
10. Many of these people used the first person plural for treatment that one of them was
receiving.
11. I heard just two negative comments from others who were waiting along the cancer
pathways.
12. Deborah James and Evan Killick, writing of immigration case workers in London faced
with developments comparable to those within the NHS, emphasize the collaboration between
case workers and their clients in order to show that “episodes of compassion” are more than
“privileged moments” in the administration of repression (Fassin 2005, 375, in James and
Killick 2012, 437).
18 2 • SOPHIE DAY
REFERENCES
18 4 • SOPHIE DAY
9
THE SOCIAL
PHENOMENOLOGY OF
THE NEXT EPIDEMIC
Pain and the Politics of Relief in
Botswana’s Cancer Ward
Julie Livingston
This chapter looks closely at some of the more fine-grained processes of clinical care to
suggest how cancer, as an emergent issue in African public health, forces long-standing
questions of palliation to the foreground and highlights the intensely social nature of pain.
I will explore the conditions that facilitate the marginalization of pain and palliation in
African clinical practice and in global health more widely, and I will examine the contem-
porary clinical dynamics that engender this marginalization in the specific context of oncol-
ogy, where many patients suffer severe and intractable pain as a result either of their illness
or of the effects of biomedical therapies. In other words, this essay is an exploration of how
and why biomedicine proceeds in Africa with so little palliation and so much compliance.
The context for this ethnography is Botswana’s lone cancer ward, where I have been
researching conditions of care since 2006. The ward opened in late 2001 in Princess
Marina Hospital (PMH), Botswana’s central referral hospital, in anticipation of the can-
cer that would follow the scaling up of the national antiretroviral (ARV) program. At the
time Botswana had the highest reported prevalence of HIV in the world, and was initiat-
ing what would become the first public ARV program in Africa.
Pain is a capacious category of experience, and in what follows I will remain tightly
focused around cancer-associated pain. I will not make claims about any other forms of
pain, which may have different moral valences, engender different phenomenological
experiences, and carry different social effects. In any event, cancer pain is quite a worthy
site of investigation in contemporary Botswana. A cancer epidemic is emerging rapidly
in the country, and this appears to be a trend across the continent.1 Botswana now boasts
1 85
higher reported incidence rates of certain cancers (e.g., cancers of the esophagus, cancers
of the cervix, and Kaposi’s sarcoma) than the United States, and in 2003 Lancet Oncology
reported a projected rise in cancer rates across Africa of 400 percent over the next five
decades.2 A more recent study reports that “even leaving aside the huge load of AIDS-
related Kaposi’s sarcoma (KS), a woman living in present-day Uganda (Kampala) or Zim-
babwe (Harare) has a chance of developing a cancer by the age of sixty-five that is only
about 30 percent lower than that of a woman in Western Europe, and her probability of
dying from a cancer by this age is almost twice as high” (Parkin et al. 2008, 683).
Thanks to the widespread public provision of antiretroviral drugs, many patients in
Botswana are now surviving their HIV disease only to find themselves grappling with
viral-associated cancers facilitated by their history of immunosuppression.3 This unfor-
tunate by-product of the otherwise marked success of Africa’s first national antiretroviral
program couples with the significant burden of other cancers already prevalent in the
population to create a situation of overwhelming proportions. The biological and clinical
challenges of oncology in the face of HIV are tremendous, as are the technical challenges
of providing meaningful cancer care in an essentially ad hoc clinical setting, and the
public health challenges that an emerging epidemic of cancer poses for a health system
with extremely limited screening capacities.4 Profound pain highlights one critical aspect
of these difficulties. Many of Botswana’s cancer patients have aggressive and advanced
disease. Such cancers are often relentlessly painful, and clinicians may respond to them
with therapies that are deeply aversive.5 At the same time, because such patients are
understood to be very sick, and because many of them become known to clinical staff
through cyclical visits and hospitalizations, the ethic of palliation that holds in the cancer
ward is unique in the hospital and in the broader health system.
A focus on pain in such a ward suggests how ethnography at the coal-face of clinical
care helps to sharpen and contextualize the complexities of drug policy while also remind-
ing us that biomedicine is a localized practice as much as it is a global system of thought
and technology (Long et al. 2008; Van der Geest and Finkler 2004; Finkler et al. 2008).
While the chemical tools of palliation are standard, the circulation of drugs and the poli-
tics and logics of palliation vary tremendously across clinical contexts. For example, in the
modern United States the issue of doubt is at the center of the long and thorny history of
pain politics and often hinges on fears of malingering and/or opiate addiction (Rouse
2009; Good et al. 1992; Jackson 2000).6 Botswana’s oncology ward points us in other
directions, suggesting the need for a very different sort of pain politics than one that
focuses on gatekeeping individual access to an assumed supply of palliative technologies,
or on developing new analgesics. As Human Rights Watch has documented, though can-
cer rates are rising, widespread shortages, and in many cases the outright absence of
strong pain relief, are the norm across Botswana and much of the global South, and it is
on this issue that African pain politics should focus (Human Rights Watch 2009).
This focus on doubt that drives American pain politics is also at the center of Elaine
Scarry’s now-famous proposition that pain is an individually held experience, one that
18 6 • JULIE LIVINGSTON
“shatters language” (Scarry 1985). Scarry found that pain simultaneously produces cer-
tainty in the person in pain and doubt in the onlooker, a dynamic of witnessing (and even
inflicting) from which a series of ethical problems around what to do about pain cascades.
She goes on to examine these ethical problems of doing, in part through an examination
of a wide variety of texts, including writings on torture and war, scripture, memoirs, and
Marx—all the while rendering pain as an object located in an individually bounded body.
Yet this conceptualization is ill suited to capture the logics of pain and the processes
of palliation on Botswana’s oncology ward, and I suspect in many other places as well. In
conversations with Tswana healers I found that it was nearly impossible to talk about
pain as pain—to imbue it with ontological import, to construct it as an object. Pain, it
seemed, could not be separated out. Invariably, it collapsed back into its underlying
pathology, which in Tswana medicine is necessarily a social pathology.7 This total situ-
atedness of pain, its refusal to be separated from the flow of pathological social experi-
ence, is meaningful, and helps us move from the problem that doubt presents to the
social effects of certainty.8
The oncology ward is an intensely social space, one where doubt is simply not at the
center of the problem around “doing” that pain presents. As we will see in what follows,
everyone knows with certainty that drilling into a patient’s bone marrow or sawing off a
patient’s leg produces pain, and yet this pain, which is caused in order to heal, is often
seemingly ignored as it is being inflicted. In taking a social approach to pain I am in
sympathy with anthropologist Talal Asad’s ideas about the body, agency, and pain, which
contrast with Scarry’s proposition. In moving from text to experience, from the specificity
of torture to broader categories of social interaction, Asad does not see pain as an object
to be overcome by an agentive individual. Instead, he argues that pain is a relationship.
Asad acknowledges that the somatic experiences of injured persons cannot be fully
accessed by observers, but he reminds us that this is not all there is to pain. He writes:
“Sufferers are also social persons (animals) and their suffering is partly constituted by
the way they inhabit, or are constrained to inhabit, their relationship with others” (Asad
2003, 85; see also Das 1997). In other words, pain begs a response. In order to take a
close-up view of these social dynamics of pain and palliation, I am going to offer an
unfortunately somewhat grisly excerpt from my ethnographic field notes.
A F T E R T H E A M P U TAT I O N
F I E L D N OT E S
18 8 • JULIE LIVINGSTON
patient—I remember M—he had accepted the need for amputation and was almost cheer-
ful about it—now this. If I were his relative I would be through the roof. Go ferosa sebete.
PA I N M A N A G E M E N T I N B OT S WA N A
My purpose in presenting this very visceral incident is not to exploit poor M for theatrical
purposes, and I confess that I feel a bit uncomfortable about exposing the intimacies of
his vulnerability. Yet, given how abstract (and in doubt; cf. Scarry 1985) the pain of others
can be, I fear that ethnography of this sort is necessary here in order that you might begin
to imagine what it would be like to be in extreme and serious bodily distress, groping for
some sort of communicative possibility that will bring relief to you, and this in an insti-
tutional setting where the mechanisms of relief are closely controlled, and where the
nearest thing to a relative or friend you have—someone actually invested in you—is (you
hope) this German oncologist. And at the same time I am also asking you to imagine
being a nurse or a doctor in a chronically overwhelmed hospital, a decade into an AIDS
epidemic in which you have seen untold suffering and death.
What are we to make of this decidedly African scene, with its German oncologist (Dr.
P) in a profoundly overcrowded urban hospital named for a European princess? Setting
aside the clinical issue of how M’s amputation went so wrong, we are left with his pain.
Where were the pain charts of smiling and frowning faces, and the 1-to-5 pain scales we
see in contemporary American and European hospitals?11 How is it possible that some-
one in such obvious distress was not given pain medicine sooner? Why was it that M
drew attention to the smell of his leg but did not complain of his substantial pain? Why
did I (and perhaps you) feel such discomfort at M’s obvious pain while the clinical staff
seemed significantly less affected, even though Dr. P and the oncology nurses were car-
ing people and passionate about their work? How and why did M manage to stay so rela-
tively calm and quiet in the face of such agony? Why is it that almost every patient leaves
the hospital or clinic with a packet of paracetamol or ibuprofen—whether they need it or
not—yet many clinical staff are reluctant to use opioids even for patients who are dying,
despite long-standing WHO protocols encouraging their use? How could we be joking
and laughing about this human leg of rotting meat while enjoying a peach?
It is ironic that biomedicine proceeds in Africa with so little palliation, given that pain
is what propels many patients into clinics and (often iatrogenic) hospital spaces. Health
planners go to great lengths to encourage patients to go to biomedical sites rather than
“traditional” healers, yet they seem generally (there are exceptions) to ignore the role of
pain, this fundamental bodily experience, as a motivation for seeking help. The sheer
force of pain has many swimming upstream in an overwrought health system. True,
there is now an African palliative-care movement. The Botswana Ministry of Health has
been developing palliative-care guidelines, as have other governments that are following
WHO recommendations. But so much has been pushed under the palliative-care
rubric—from the writing of wills to the provision of soap and basic nutrition—that the
Most patients comply with painful diagnostic and therapeutic procedures with minimal
complaint. Some of course simply fail to return for subsequent rounds of dreaded
chemotherapy, and others reach a point in the advancement of metastatic disease and
treatment complications where they are overwhelmed by the pain and so begin to cry out
or to grip the nurse’s (or visiting ethnographer’s) arm in a silent plea for help. Over time,
acute, prolonged agony has the ability to grind down even those highly practiced in the
art of forbearance, such that eventually even the scratch of the sheets, the prick of the
needle, and the grip of the blood-pressure cuff become exquisite insults. Many do not
mention their pain unless directly asked about it by the doctor, nurse, or ethnographer,
but when asked what their problem is, these patients will readily report pain, with great
firmness.
This is not to say that there is no complaining. In many ways the minor insult is
easier to express than the major one. After exchanging greetings during social visits and
clinical encounters alike, elderly women often recite a litany of places in their body where
it hurts. Such are the privileges of old age. Cancer patients, or their relatives, protest the
nausea of chemotherapy, which for some can be overwhelming. But generally in Bot-
swana, people from approximately age five up are expected to endure all but the worst
pain in silence. The few who do cry excessively are sources of hilarity for onlookers
(including medical staff ), and even for themselves. This means that subtle calculations
are continually being made by onlookers, who would never laugh at the cries of a patient
they deemed to be in true agony or distress.
FIELD NOTES
In the oncology ward, an open ward of twenty beds, there was pain as far as the eye
could see, yet it was rarely given voice. But even pain that remains unvocalized is none-
theless meant to be actively heard, anticipated, and negotiated. The social nature of pain
PA I N A N D L A U G H T E R
There is also, sometimes, absolute hilarity in the face of pain. Patients will laugh in
interviews when talking about their pain or the pain of others. Women reference labor
pains and laugh at the image and the memory. And in the oncology ward and clinic,
somewhat to my surprise, I have found (and deeply enjoyed) that laughter is ubiquitous:
elderly women performed outrageous, hysterical pantomimes of the predicament of
simultaneous nausea and diarrhea after chemo; middle-aged men mock the very German
mannerisms of the oncologist; young men and women make deadpan humor out of their
hair loss; women with breast cancer joke about their own fear of death. There was one
truly funny fifty-year-old woman who would joke about going out and hooking for
F I E L D N OT E S
January 8, 2007
A young woman, 19, with breast lumps. Probably not cancer—she needs an aspirate and
there is much struggle. She keeps wriggling away. Her aunt is laughing so hard at the
spectacle, and then she says she needs to leave the room. Dr. P asks the aunt to hold the
patient’s hand—he is doing it very quickly, but the aunt starts laughing and leaves. We all
laugh—all of us. She struggles more and 2 nursing assistants and the nurse all now are
holding her and laughing—it is very comical and Dr. P is chuckling. Chasing her across
the table. Just a small prick. It is nothing. You must sit still. Why all this fuss? This is not
painful really. Afterwards she finally has it done, lying down and three people helping hold
her in place—Dr. P jabs the needle in, pushing it in and out several times to collect any
possible calcius material in the lump. She is crying and the nurse is starting to look a bit
annoyed (a young nurse—L, she is only in her early 20s) and Dr. P asks what is wrong? It’s
over. But she says botlhoko (pain) in a quiet voice and looks injured and angry.
Missionaries, expatriate clinicians, and other observers from the nineteenth century
through to the present often took such examples of laughter in the face of the pain of
others as a troubling comment on the nature of care and compassion in Botswana, or as
a curious cultural artifact (Landau 1996). And yet upon closer examination it appears to
be something other than just insensitivity or some feature of an exotic culture at play. In
fact, the banana-throwing boy became a favorite memory in the clinic, affirming as he
did that the procedure was painful, though we all (including the patient) were meant to
pretend that it wasn’t. The laughter was particularly cathartic for the oncologist, who
spent his days inflicting pain in the name of care.
Laughter, it seems, has long been a social strategy for shaping particular forms of
autopalliation. Laughter, when it works, as in the case of the nurse/patient above, is
meant to socialize and redirect patient anxiety into the disposition of calm forbearance
that lies at the heart of autopalliation. It is followed by patting or stroking and the repeti-
tion of “sorry, sorry”—a common way of soothing babies and small children. When
laughter doesn’t work, as in the case of the young woman with the breast aspiration, it is
put down to the dramatic excesses and foolishness of the young, and this, too, is comical.
In the same way, women often laugh and openly mock the screams of young women in
labor; their cries are seen as a sign that these girls, who thought they were ready for sex,
are not yet ready for motherhood.
This is certainly not to suggest that the laughter is disingenuous, or an explicit and
conscious strategy, but rather to remark on its social effects. If pain with its potential
for isolating embodiment threatens social rupture, laughter offers the prospect of
reestablishing an embodied sociality. I do not intend to be overly functionalist here.
Laughter is often an overwhelming experience that comes on suddenly, not a practice
that emerges out of purpose and forethought. We know that laughter, like all emotional
experiences and expressions, has a cultural logic, and that it is possible to decode
this logic, though at the risk of taking all the fun out the laughter itself. Some of its
joy, no doubt, derives from its irreverence. Laughter in the oncology ward often acted
to acknowledge the absolute absurdity of misfortune. This, as we well know, is not
unique to Botswana, and while there I was often reminded not only of Bakhtin, but
also of keeping my friend Matthew company while he sat receiving the chemo drip
for the liver cancer that killed him back in 1994 at age twenty-eight. When the nurse
would check in and ask if he was OK, he would reply, “Nothing to worry about here, just
a little cancer,” and somehow it was absolutely hilarious to us. Laughter often comes in
moments when a cultural norm fails to be enacted—the patient fails to keep silent, the
doctor fails to maintain his authority—and in its recognition of the absurd, laughter
reinforces the norm, by socializing it. In none of these scenarios does anyone laugh
alone!
CONCLUSION
I have tried to suggest that pain is a fundamental social experience in Botswana’s cancer
ward. Pain drives patients into the institution, and pain is also created by the practices of
the institution itself. Yet, despite the fact that pain is one of the central animating forces
of biomedical care in Africa, of which Botswana’s cancer ward is but one instantiation,
the biomedical technologies of palliation are in short supply and put to often uneven and
uncertain use. Pain reveals the intensely social nature of the ward; and the ward, the
intensely social nature of pain. But in this context, the mechanisms and semantics of
acceptable expression are particular, and often difficult to achieve. There may be problems
of expression and access, but they do not center around doubt. Into the breach of expres-
sion comes laughter, a social experience for re-instantiating and reestablishing commu-
nity in moments of terrible anxiety and duress.
C O D A O N A FA I L E D L E A R N I N G C U RV E
FIELD NOTES
1. See, for example, Travis 2007a and Morris 2003. For Botswana, see Botswana National
Cancer Registry, Analysis of Registered Cancer Patients 1986–2006 (2006).
2. For comparative rates, see the International Agency for Research on Cancer (IARC)
global fact sheets at http://globocan.iarc.fr/ (accessed June 14, 2010). Note also that there is
much more likely to be serious underreporting of cancers in Botswana, where the registry is
new, diagnostic sites are few, and screening nonexistent, except for a new and still developing
pap-smear program for HIV-positive women (Morris 2003).
3. I say “public provision” because the drugs are provided free of charge to all citizens who
require them. But the program itself is provided through a public-private partnership of which
Botswana pays 80 percent of the bill. Anthropologist Betsey Brada (2011) is currently research-
ing these partnerships in Botswana.
4. Many of these ideas and analytic frameworks around improvised medicine come out of
conversations with Steve Feierman about an ongoing collaborative project. I am grateful to
Steve for sharing his ideas about how biological, technical, and social challenges combine to
shape clinical uncertainties in Africa. On oncology, see the excellent work of Kenyan anthro-
pologist Benson A. Mulemi (2010).
5. Because of the lack of screening capabilities, a majority of Botswana’s cancer patients
are diagnosed after their disease is already advanced. Such cancers are widely recognized to
cause moderate to severe pain in the vast majority of patients (Cleland et al. 1996; Daut and
Cleland 1982; Portenoy and Lesage 1999; Foley 1979).
6. Keith Wailoo (2010) is currently writing a book that hinges on this question in Ameri-
can medical policy.
7. Tshenolo Thebe and Difelo Botsang, interview with the author, Kumakwane, December
7, 2006; Mmatli Rannokgwane, interview with the author, Thamaga, December 10, 2006;
Mma Mantshadi, Ikgopoleng Keoreme, Ketlantshang Piet, and Omphemetse Piet, interview
with the author, Kumakwane, December 9, 2006; Modise Thebe, interview with the author,
Kumakwane, December 15, 2006; Modisaetsile Thapelo, interview with the author, Kumak-
wane, December 15, 2006.
8. Pain medicines, however, do have a thingy-ness. Patients are clear that some medicines
are “painkillers,” separating pain from pathology. This dynamic of separation and attendant
individuation around pain (in dentistry) has been beautifully articulated by historian Paul
Landau (1996) in relation to early-twentieth-century mission practice.
9. Pethidine is a strong synthetic opioid. American readers may be familiar with its brand
name, Demerol.
10. Later there would be some debate as to why they failed to do this, with the surgeons
arguing that M himself had requested to keep as much of his thigh as possible, balking at the
loss of the femur. My point here is not to showcase surgical failure. I am not qualified to judge
who, if anyone, was at fault in this case of amputation gone wrong, and I have the utmost
respect for the skill and commitment of the hospital’s orthopedic surgeon. Advanced Kaposi’s
sarcoma often necessitates amputation, but surgeons are faced with a difficult challenge since
the skin above the amputation site is often unhealthy, thus making it difficult to close the
wound safely.
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Foley, K. M. 1979. “Pain Syndromes in Patients with Cancer.” In Advances in Pain Research and
Therapy, edited by K. M. Foley, J. J. Bonica, and V. Ventafridda, 59–75. New York: Raven
Press.
Good, M. J., P. Brodwin, A. Kleinman, and B. Good, eds. 1992. Pain and Human Experience:
Anthropological Perspectives on the Lived Worlds of Chronic Pain Patients in North America.
Berkeley: University of California Press.
Human Rights Watch. 2009. Unbearable Pain: India’s Obligation to Ensure Palliative Care. New
York: HRW.
International Narcotics Control Board. 2005. Report of the International Narcotics Control Board
for 2004. New York: United Nations. http://www.incb.org/documents/Publications
/AnnualReports/AR2004/AR_04_English.pdf.
Jackson, Jean. 2000. Camp Pain: Talking with Chronic Pain Patients. Philadelphia: University
of Pennsylvania Press.
Koshy, Rachel C., et al. 1998. “Cancer Pain Management in Developing Countries: A Mosaic
of Complex Issues Resulting in Inadequate Analgesia.” Supportive Care in Cancer 6:430–37.
Landau, Paul. 1996. “Explaining Surgical Evangelism in Colonial Southern Africa: Teeth, Pain
and Faith.” Journal of African History 37 (2): 261–81.
Livingston, Julie. 2008. “Disgust, Bodily Aesthetics, and the Ethic of Being Human in Bot-
swana.” Africa 78 (2): 288–307.
Jonathan M. Metzl
Random acts of mass violence raise the specter of death from schizophrenia. This is
because, in the United States, random acts of violence invariably produce widespread
anxieties that “sane” persons will be killed by “insane” ones.
For instance, American popular opinion often reflexively focuses on the causal impact
of mental illness in the aftermath of mass shootings. In the days following the school
shooting in Newtown, Connecticut, in December 2012, the American media rushed to
diagnose the shooter, Adam Lanza, as such. “Was Adam Lanza an Undiagnosed Schizo-
phrenic?” asked a headline in Psychology Today (Turndorf 2012). “Too many people with
acute schizophrenia have gone untreated,” added the New York Times. “There have been
too many Glocks, too many kids and adults cut down in their prime” (Steinberg 2012).
Schizophrenia also featured prominently in National Rifle Association president Wayne
Lapierre’s press conference held one week after the shooting. Lapierre blamed “delu-
sional killers” for American violence while calling for a “national registry” of persons
with mental illness (Kliff 2012). Conservative commentator Anne Coulter then upped the
ante, arguing that “guns don’t kill people—the mentally ill do” (Coulter 2013).
Such associations undoubtedly make sense on many levels. Crimes like Newtown fall
outside the bounds of sanity: who but an insane person would do such horrific things? And
of course, narrative scripts linking guns and mental illness arise in the aftermath of many
mass killings, in no small part because of the mental-health histories of the assailants.
Aurora, Colorado, movie-theater shooter James Holmes “was seeing a psychiatrist special-
izing in schizophrenia” (WNYC 2012). Classmates felt unsafe around Arizona shooter
205
Jared Loughner because he would “laugh randomly and loudly at nonevents” (Pickert
and Cloud 2011). Mother Jones magazine reported that the perpetrators of “at least” thirty-
eight of sixty-two mass shootings in the United States displayed “symptoms . . . including
acute paranoia, delusions, and depression” prior to committing their crimes (Follman
2012).
However, the contention that schizophrenia or other serious mental illness causes
particular acts of violence is more complicated than it might seem. On the aggregate
level, surprisingly little population-level evidence supports the notion that individuals
with serious mental illness are more likely than anyone else to kill other people. Accord-
ing to Columbia University psychiatrist Paul Appelbaum and Duke psychologist Jeffrey
Swanson, less than 3%–5% of American crimes involve people with mental illness, and
the percentages of these crimes that involve guns are actually lower than the national
average (Appelbaum and Swanson 2010). Similar findings appear in databases that track
gun homicides, such as the database of the National Center for Health Statistics—which
found that fewer than 5% of the 120,000 gun-related killings in the United States
between 2001 and 2010 were perpetrated by people with mental illness (CDC 2013).
Studies also suggest that the stereotype of the violent madman represents an inver-
sion of on-the-ground reality. Psychologist Paul Nestor (2002) shows that being diag-
nosed with schizophrenia reduces a person’s risk of violence over time, since the illness
is in many cases marked by social isolation and withdrawal. Social workers John Brekke,
Cathy Prindle, and their collaborators (2001) illustrate that the risk is exponentially
greater that individuals diagnosed with schizophrenia will be assaulted by others rather
than the other way around. Their extensive surveys of police incident reports demon-
strate that, far from posing threats to others, people diagnosed with schizophrenia have
“victimization rates 65 to 130 percent higher than those of the general public.” Similarly,
a 2013 investigation by the Portland (Maine) Press Herald (2013) found that “at least half”
of persons shot and killed by police in Maine suffered from diagnosable mental illness.
Moreover, the overwhelming majority of persons who fit the profile of “mass shoot-
ers” and who end up seeing psychiatrists—gun-owning, paranoid, angry white men—do
not commit crimes. And psychiatrists are notoriously poor at predicting which of their
patients will shoot or attack; psychiatry, after all, is more a preventative science than a
predictive one (Swanson 2011; Friedman 2012; RWJF 2012). As Swanson (2011) puts it,
“[P]sychiatrists using clinical judgment are not much better than chance at predicting
which individual patients will do something violent and which will not.”
Why, then, do we associate schizophrenia and other serious mental illness with mass
violence, if the association is not based in real-world events? What gives these associa-
tions their emotional charge?
To be sure, beliefs about the volatility of insanity date back to burr-hole surgery and
ships of fools. As the eminent historian Roy Porter (2002, 10–33) aptly described it, nar-
ratives of insane violence “may be as old as mankind.” Yet arguments about the timeless
nature of stigma against schizophrenia often fail to address the impact of relatively
comparison of 1950 and 1996 results shows that conceptions of mental illness have broad-
ened somewhat over this time period . . . but that perceptions that people [with schizophre-
nia] are violent or frightening substantially increased, rather than decreased. . . . [T]he
proportion who described a mentally ill person as being violent increased by nearly 2 1/2
times between 1950 and 1996. . . . [T]here has been a real move toward acceptance of many
forms of mental illness as something that can happen to one of “us,” but people with psy-
chosis remain a “them” who are more feared than they were half a century ago. (188)
This brief chapter—adapted from a larger study of race, violence, and mental illness
(Metzl 2010)—contends that associations between schizophrenia, violence, and guns
attain particular valence because of their oft-invisible associations with American anxie-
ties about race. These associations gained charge during the American civil rights era of
the 1960s and 1970s in the context of a set of larger conversations about racial protest
and social justice. During this vital period, new clinical ways of defining mental illness
unintentionally combined with growing cultural anxieties about armed revolt on the part
of black political leaders and groups. Meanwhile, reports about new diagnostic technolo-
gies merged with concerns about the “uncontrolled” nature of urban unrest. As these
historical contingencies evolved, the American public, and at times members of the
scientific community, increasingly described schizophrenia as a violent social disease,
even as psychiatry took its first steps toward defining schizophrenia as a disorder of
biological brain function.
The chapter begins by discussing changing twentieth-century relationships between
U.S. psychiatric and popular understandings of schizophrenia and increasingly medical-
ized notions of violence. It then highlights 1960s- and 1970s-era links between U.S.
psychiatric concerns about schizophrenic violence and mainstream anxieties about racial
protest. The chapter concludes by discussing how the certainty of the diagnosis that
many Americans make about insanity and mass violence is undermined by the shifting
historical and racialized nature of the discourse surrounding guns and mental illness.
C H A N G I N G A S S O C I AT I O N S B E T W E E N
SCHIZOPHRENIA AND VIOLENCE
A F R A M E S H I F T I N T H E C O N T E X T O F A R A C I A L LY C H A R G E D
POLITICAL MOMENT
Why did schizophrenia morph in the 1960s from an illness of white docility to one of
black violence and hostility? Two key contextual factors help explain the transforma-
tion—neither of which suggests any actual increase in violent behavior by angry
black men.
First, notions of violence became increasingly central to psychiatric definitions of schiz-
ophrenic illness. Again, prior to the 1960s, psychiatry posited that schizophrenia was a
psychological “reaction” to a splitting of the basic functions of personality. Official descrip-
tors emphasized the generally calm nature of such persons in ways that encouraged
2 10 • JONATHAN M. METZL
armed resistance in the interest of African-American justice. Meanwhile, Pan-Africanists
and African nationalists such as Malcolm X described a “global African community” con-
necting “native” and “diaspora” Africans, or argued, as did Elijah Muhammad, that “the
white devil’s day is over.” In 1968, a pair of brothers from Detroit named Milton and
Richard Henry (later Gaidi and Imari Abubakari Obadele) argued that U.S. blacks should
form their own independent nation-state, the Republic of New Afrika, in the so-called
Black Belt South (see Carmichael 2005; Carson 1981; Lewis 1998; Obadele 1975).
These two 1960s-era trajectories—psychiatric diagnostic revision and increasingly
confrontational civil rights protests—merged in the pages of leading professional psychi-
atric journals. Growing numbers of research articles from the 1960s and 1970s used
DSM II language to assert that schizophrenia was a condition that also afflicted “Negro
men,” and that black forms of the illness were more hostile and aggressive than were
white ones. Researchers used DSM II criteria to uncover hostile aspects of black schizo-
phrenia, such as paranoia, delusions, and rage, or to associate schizophrenia with civil
rights demonstrations. Meanwhile, studies conflated black schizophrenia with Black
Power in order to illustrate evolving understandings of the illness as hostile or violent,
or used long-standing stereotypes about manic, crazy black men to demonstrate “new”
forms of schizophrenic illness.
Again, the New York psychiatrists Walter Bromberg and Franck Simon (1968)
described a new form of what they called “protest psychosis,” a condition in which the
rhetoric of the Black Power movement drove “Negro men” to insanity. In their formula-
tion, black psychosis produced the threat of bodily attacks on “Caucasians” as a result of
“antiwhite productions and attitudes” (155–60).
Bromberg’s and Simon’s central contention—that participation in civil rights protests
caused violent schizophrenic symptoms in “Negro populations” in ways that threatened
“white” civilization—also appeared in other mainstream psychiatric research articles in the
1960s and 1970s. An article titled “Six Years of Sit-Ins: Psychodynamic Causes and Effects,”
in the International Journal of Social Psychiatry (Pierce and West 1966, 29), argued that
Negroes developed “dangerous aggressive feelings” when they participated in civil rights sit-
ins. And an extensive article in the Journal of Consulting & Clinical Psychology (Raskin,Crook,
and Herman 1970, 73) argued that “blacks” with schizophrenia rated higher than “whites”
on a set of “hostility variables” due to delusional beliefs that “their civil rights were being
compromised or violated.” The American Journal of Psychiatry sounded a similar refrain in a
study, “Hallucinations and Delusions in White and Negro Schizophrenics” (Vitols, Waters,
and Keeler 1963, 472), that linked the finding that “incidence of hallucinations was signifi-
cantly higher among Negro schizophrenics than among white schizophrenics first admitted
to the state hospital system” to the possibility that “there are factors in the Negro culture that
predispose to more severe schizophrenic illness.”
At the time, it likely appeared to many psychiatrists that an epidemic of schizophrenia
was spreading among angry black men. In fact, psychiatry’s frame shift produced new
categories of schizophrenic illness.
2 12 • JONATHAN M. METZL
News reported on September 23, 1961, in an article titled “FBI Hunts NAACP Leader”:
“Agents for the Federal Bureau of Investigation were searching many areas of Harlem this
week as part of a nation-wide hunt for bearded Robert F. Williams, Monroe, N.C., NAACP
leader. . . . ‘Williams allegedly has possession of a large quantity of firearms, including
a .45 caliber pistol. . . . He has previously been diagnosed as schizophrenic and has
advocated and threatened violence.’ ” The FBI distributed 250,000 posters to the same
effect.
Malcolm X, Robert Williams, and other leaders of African-American political groups
were far from schizophrenic. But fears about their political sentiments, guns, and sanity
mobilized significant public response. Articles in the American Journal of Psychiatry—
such as a 1968 piece titled “Who Should Have a Gun?”—urged psychiatrists to address
“the urgent social issue” of firearms in response to “the threat of civil disorder” (Roten-
berg and Sadoff 1968, 841). And Congress began serious debate about gun-control leg-
islation, leading to the Gun Control Act of 1968.
CONCLUSION
In no way is this brief history meant to suggest that mental illness is socially fabricated,
or, worse, that people’s symptoms are somehow inauthentic. Hallucinations, delusions,
social withdrawal, cognitive decline, and profound isolation rupture lives, careers, fami-
lies, and dreams in profoundly material ways. Such symptoms afflict persons of many
different social, economic, and racial backgrounds, many of whom are deeply aware of
the sense of loss that their disease represents, even if society is less attuned. And again,
compelling evidence suggests that many mass shooters do indeed suffer from mental
conditions, and that their horrific crimes might have been prevented had they come
sooner to the attention of mental-health professionals.
At the same time, history suggests that decisions about which crimes American cul-
ture diagnoses as crazy, violent, or militant are driven as much by the politics and anxie-
ties of particular cultural moments as by the actions of individually disturbed brains.
Only during the civil rights era did emerging scientific understandings of schizophrenia
become enmeshed in a set of historical currents that marked particular bodies, and par-
ticular psyches, as armed and violent in particular ways. And only during that era did the
mechanisms of racialized logic emerge, whereby schizophrenic violence came to repre-
sent a threat to civilized society.
This history remains invisible today—and this is in part the point. Psychiatry long ago
removed terminology connoting aggression and hostility from the DSM, and overt
expressions of medical racism became increasingly taboo. Meanwhile, when shootings
are linked to crazed, white male shooters, the end result is not bipartisan calls for gun-
control legislation, as was the case in the 1960s, but reaffirmations of gun rights by
leading U.S. politicians and by the National Rifle Association. And groups that advocate
antigovernment platforms and support the broadening of gun rights to defend against
2 14 • JONATHAN M. METZL
REFERENCES
Appelbaum, P. S., and J. W. Swanson. 2010. “Gun Laws and Mental Illness: How Sensible Are
the Current Restrictions?” Psychiatric Services 61 (7): 652–54.
“Are You Likely to Be a Happily Married Woman?” 1949. Ladies’ Home Journal, March 31.
Bleuler E. (1911) 1950. Dementia Praecox, or the Group of Schizophrenias. Translated by Joseph
Zinkin. New York: International Universities Press. Originally published as Dementia
praecox oder die Gruppe der Schizophrenien, in Handbuch der Psychiatrie, edited by Gustav
Aschaffenburg (Leipzig and Vienna, 1911–28).
Brekke, J. S., C. Prindle, S. W. Bae, and J. D. Long. 2001. “Risks for Individuals with Schizo-
phrenia Who Are Living in the Community.” Psychiatric Services 52 (10): 1358–66.
Bromberg, Walter, and Frank Simon. 1968. “The ‘Protest’ Psychosis: A Special Type of Reac-
tive Psychosis.” Archives of General Psychiatry 19:155–60.
Carmichael, Stokely. 2005. Ready for Revolution: The Life and Struggles of Stokely Carmichael
(Kwame Ture). New York: Scribner.
Carson, Clayborne. 1981. In Struggle: SNCC and the Black Awakening of the 1960s. Cambridge,
MA: Harvard University Press.
CDC (Centers for Disease Control and Prevention). 2013. “Leading Causes of Death Reports,
National and Regional, 1999–2010.” http://webappa.cdc.gov/sasweb/ncipc/leadcaus10_
us.html. Accessed July 23, 2014.
CSAMPA (Committee on Statistics of the American Medico-Psychological Association). 1918.
Statistical Manual for the Use of Institutions for the Insane. New York: American Medico-
Psychological Association.
Coulter, Ann. 2013. “Guns Don’t Kill People, the Mentally Ill Do.” anncoulter.com, January 16.
www.anncoulter.com/columns/2013–01–16.html. Accessed November 1, 2013.
Delahanty, J. 2001. “Differences in Rates of Depression in Schizophrenia by Race.” Schizo-
phrenia Bulletin 152 (1): 29–38.
Diagnostic and Statistical Manual of Mental Disorders. 1968. 2nd ed. Washington: APA Press.
Follman, Mark. 2012. “Mass Shootings: Maybe What We Need Is a Better Mental-Health
Policy.” Mothjerjones.com, November 9. www.motherjones.com/politics/2012/11/jared-
loughner-mass-shootings-mental-illness. Accessed November 1, 2013.
Friedman, Richard A. 2012. “In Gun Debate, a Misguided Focus on Mental Illness.” New York
Times, December 18, D5.
Haldol. 1974. Advertisement. Archives of General Psychiatry 31 (5): 732–33.
“Insanity Ascribed to Some Authors: Psychiatrists Are Told of ‘Literary Artists’ Who Evidence
Schizophrenia: Grandiloquence Is Sign.” 1935. New York Times, May 15, 23.
“Insanity: Mental Illness among Negroes Exceeds Whites, Overcrowds Already-Jammed
‘Snake Pits.’ ” 1949. Ebony, April, 19–23.
Kliff, Sarah. 2012. “The NRA Wants an ‘Active’ Mental Illness Database.” Washington Post
(blog), December 21. www.washingtonpost.com/blogs/wonkblog/wp/2012/12/21/the-
nra-wants-an-active-mental-illness-database-thirty-eight-states-have-that-now. Accessed
November 1, 2013.
Lewis, John. 1998. Walking with the Wind: A Memoir of the Movement. New York: Simon &
Schuster.
2 16 • JONATHAN M. METZL
11
THE WEALTH OF
POPULATIONS
Poverty and HIV/AIDS in
Rural Central China
Shao Jing
In this chapter, I will examine the disastrous irony that confronts us when populations,
especially populations in poverty, become valued as economic resources. Rather than
accepting “poverty,” variously measured or proclaimed, as a source of vulnerability, I
argue, we need to interrogate regimes of population custodianship that demonstrate a
fierce rationality that serves to legitimize political power in the name of “fighting poverty.”
Productivity, styled as the lifeline for household farming and local industry and larger-
scale policies, is itself implicated in massive deaths among the most vulnerable. This is
the story of how rural Chinese villages approached and absorbed such death.
A massive HIV infection of uncounted numbers of people in rural central China sets
the stage for this reflection. As I elaborate below, in the early 2000s, many rural villages
of Henan Province experienced a devastating HIV epidemic. However, at the time of
infection and as the infection was spreading, villagers had no knowledge of the disease
that in the absence of appropriate treatment would eventually claim their lives. Only
several years later, when many villagers in their prime died after falling severely ill or not
responding to any available medical treatment, did others in the village begin to realize
that they would soon follow suit. Eventually their suspicions became a crushing reality
when they found out that what they shared with the departed was a deadly virus that had
silently entered their blood when they donated blood to commercial plasma collectors.1
What struck me most powerfully when I first began field research on this epidemic
early in the 2000s was the absence of the gloom I had expected to encounter in these
rural communities where so many people were living in the midst of constant reminders
217
of death. Instead, I found defiant exertions of dwindling vitality, heightened solidarity
among the inflicted, and a stubborn refusal to accept the finality of death in the tireless
search for a cure. For example, in many cases this defiance was often demonstrated by
their heightened attention to finding a partner or starting a family after the death of their
HIV-positive spouse. Within the villages, living was permeated by this intensity of affects
around death and dying. At the same time, a thick wall of fear surrounded the villages,
manifesting itself concretely in the lack of official acknowledgment and possibility for
diagnosis and treatment. A few years and many deaths later, most survivors started the
antiviral-drug treatment that the state provided. The certainty of death was replaced by
uncertainties over making a living, raising young children, and providing for them. Yet
many still looked back with fond memories upon the “bad old days,” as they sometimes
referred to those times.
These impressions and experiences that I had early in my field research were hardly
“cultural” in themselves. They were personal emotions and individual actions that one
might find in many similar zones of death and social death. For a cultural analysis, I
argue, we need to examine the social and political forces that brought about the abandon-
ment that the villagers experienced so profoundly. Not only did their lives and deaths
cease to count; they themselves also became objects of avoidance and concealment.2 At
least in this Chinese story, we are confronted with a political culture tenacious in that it
has survived upheavals of many radical ideological shifts in recent history, and powerful
in that it has reconsolidated the social or structural arrangements for its perpetuation. It
is also a political culture that is becoming increasingly self-conscious as “culture,” and
often expresses itself strenuously as deriving from and hence justified by the uniqueness
of Chinese social and historical conditions. Consequently, in our cultural analysis of the
epidemic that has brought out numerous individual calamities, we should scrutinize
critically the same operations of political power that are now widely regarded with admi-
ration or envy as having also created the stunning economic success in China.
P O P U L AT I O N S A N D N U M B E R S
I first began ethnographic work in Henan Province in the fall of 2002. The previous year,
while teaching anthropology at a small liberal-arts college in the United States, I had read
an article in the New York Times that reported on the massive HIV infection and alarming
number of deaths from AIDS in some rural villages in that province. Through selling
their blood plasma to plasma collectors, villagers had become infected with HIV. The
majority of these commercial donors came from rural areas, places that later came to be
called “AIDS villages.”3
My journey began in Beijing, where a friend introduced me to two writers originally
from Henan, hoping that they would provide contacts for my research. They had both
heard about the “AIDS villages” but had little knowledge beyond an awareness that the
government—particularly the Henan provincial government—was keeping the existence
2 18 • SHAO JING
of these villages and their whereabouts a secret. They arranged for me to ask for help
from an associate of theirs who was the head of the Writer’s Association of Nanyang, a
prefecture of Henan. They also advised me to keep mum on exactly what I was looking
for on that trip.
After being introduced to officials as a cultural anthropologist interested in studying
the rural health-care system in a township two hours’ drive from the city of Nanyang, I
stayed in the government building for several days as a guest of the township Commu-
nist Party chief. There, I spent most of my time visiting primary schools in the villages
under the township’s jurisdiction. I was assigned a companion, a young official from the
township’s education office, who never let me out of his sight. In our time together, he
recommended many other cultural sites he thought appropriate, such as remnants of old
temples and monuments, which I dutifully visited. It became clear that I was not to meet
with a single villager struck down by AIDS on this trip because nobody I talked to would
dare give me any useful leads with the official always present with me. Furthermore, I
would have little chance of hearing of the experiences of those already infected with
HIV—even if they were standing right in front of me—because most of those infected
had not yet been checked and diagnosed. They themselves would not have known of their
infection.
The trip was far from fruitless, however. I was struck by the odd demography of the
schools I visited. They all seemed to have the same anomaly in enrollments: two or more
loaded years of forty to fifty students followed by one lean year with only about twenty.
The explanation that my companion gave was perfectly plausible: the fat years came from
when the township relaxed its enforcement of the nation’s population policy. I then had
the opportunity to witness how a lean year could be made. The township government
threw a banquet one afternoon for a gang of some three dozen strong-bodied men, some
in police uniforms. I was invited to join the conviviality. During the meal, I heard men-
tion of “a task” the men were to “execute” at midnight. Yet I could neither discern exactly
what the nature of the banquet was nor figure out what the “task” might be. The next
morning, I was woken up by both a loud commotion outside the tightly closed gate to
the courtyard on the side of the government building and the wailing and cursing of the
many women locked inside the courtyard. I asked a nearby shopkeeper about the com-
motion and wailing. He replied that the women had been rounded up the night before
for out-of-quota pregnancies. Their pregnancies would have to be terminated so that the
township government could fulfill its enforcement requirements. Another story sur-
faced: the fat years had more than handsomely funded these very raids through fines that
the township government collected on the numerous out-of-quota pregnancies that had
been carried to term. These fines had already become a vital source of revenue for bloated
township bureaucracies in many parts of rural China.4
What I was allowed to see on that trip has important implications for understanding
the HIV/AIDS epidemic in a great many of the rural areas in Henan and to a lesser extent
in a few other provinces in central China. In what follows, I will discuss these implications
T H E W E A LT H O F P O P U L AT I O N S
The official shroud of secrecy did little to hamper my eventual access to many devastated
“AIDS villages” in other parts of Henan. In this, I was initially helped by a few journalists,
who risked their jobs by tenaciously following the hidden epidemic. Many of the HIV-
infected villagers I encountered early in my research expressed a kind of remorse for
having brought the disease onto themselves, yet I noted how this expression was given
almost as an afterthought: “Had I known that I could get this horrible dirty disease, I
would never have sold blood!”5 They had participated actively in the economy of plasma
collection and fractionation as paid suppliers of the raw material, or what in the industry
is referred to as “source plasma.” They were, in fact, aware of the health risks they took
when they obtained multiple donor IDs and traveled from one location to another so that
they could sell far more frequently than allowed by the official standards. Many of them
even knew that they had already been infected with hepatitis B and C, and they sought
to evade routine screenings in order to keep selling.6 But none could have envisioned the
finality and the complete certainty of painful death from a disease without any cure as a
result of their own calculated risk taking.7
This last perspective is where the individual donors diverge from the impersonal
views and calculations of the plasma-fraction industry, the health-care sector, and the
government—a confluence of interests on the opposite side of this business bargain. For
these latter interests, what might be final and complete for one individual becomes a
calculable probability within a population and thus worthy of the name “risk.” For exam-
ple, an established chronic infection of hepatitis B or C may or may not lead to terminal
liver diseases, cirrhosis, or cancer, and ultimately death, and therefore can be seen as a
risk by the individual donor. But the fact that infection with hepatitis C, which had been
noted to be rising sharply in China among plasma donors, presents a much higher like-
lihood of ending in terminal liver diseases than hepatitis B was never communicated
forcibly to enthusiastic donors. They thought of hepatitis C as a variant of the more
familiar hepatitis B already endemic in China. Indeed, I heard many seasoned former
donors jokingly mention the medical abbreviation of HCV; it was as if it were rendered
perfectly harmless since it sounded exactly like the Chinese pronunciation of the word
for “crackers” (binggan).
When in April 1996 the government acted, upon clear evidence that the HIV epi-
demic had already spread to the millions of plasma donors in Henan and its neighboring
provinces, to shut down all plasma-collection stations in the country, it was evidently
trying to contain a major HIV outbreak. However, there was no mention of HIV in the
official pronouncements prohibiting plasma collection. The unexplained crackdown
We can now identify a number of forces that contributed to the feverish thriving of the
fractionation industry in China early in the 1990s, which in turn allowed the stunningly
Efforts over the years to track, conceal, or expose the HIV epidemic among rural com-
mercial plasma donors in China by people with diverse political persuasions, agendas,
and interests have yielded bewildering crops of contradicting numbers and estimates. I
have always found it impossible to agree with any of them, and I have refused to add to
the confusion with my own estimates. Close encounters with the lives, and sometimes
deaths, of many individual people in my field research have also made me averse to the
perspective as well as distance that discoursing in large numbers would impose. I also
want to insist that my aversion is neither entirely personal nor of a purely disciplinary
origin, but rather is necessary for an account of the political culture without the analysis
itself being absorbed into the perspective of that same culture.
In this exercise, it is illuminating to look at a few of the numbers concerned with the
scope of the epidemic that have come from different sources. In 2001, an alarming report
by the United Nations Theme Group on HIV/AIDS in China included two estimates on
the number of HIV infections resulting from commercial plasma collection (UN Theme
Group on HIV/AIDS in China 2001). The figure supplied by the Ministry of Health was
150,000, whereas the other, much higher figure advanced by the well-known and contro-
versial activist Dr. Gao Yaojie was above one million. The Chinese government refused
to endorse the estimates, projections, and conclusions in this report, although much of
the data in it came from Chinese sources. The application that the Chinese government
N OT E S
1. Blood cells are removed from whole blood and reinfused to the plasma donor. This opens
the transmission route to blood-borne infections such as malaria, hepatitis B and C, and HIV.
2. A recent study published in a Chinese medical journal, for example, concludes that
HIV-related deaths in a rural area in Henan do not have any statistically significant impact on
the overall life expectancy of the population in the area (M. Wang et al. 2011).
3. I have reported aspects of this research in other publications: in Shao 2006 and Shao
and Scoggin 2009. See also Erwin 2006.
4. When China was hit by the SARS epidemic in the spring of 2003, it was the network
of the population-control agencies, well funded and functioning, that was mobilized to delegate
and execute the necessary public-health response, which consisted of detecting, reporting, and
quarantining people suspected of the infection, and effectively reducing movements of the
already high number of the nation’s mobile populations.
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232
The chapter is divided into a number of sections. First, as a point of departure, we
provide some ethnographic snippets of a visit to a TB clinic in the western region of
Nepal. This provides the backdrop for the section outlining the history of attempts at
introducing the WHO-sanctioned TB program Direct Observation of Treatment, Short-
Course (DOTS) in the context of Nepal, focusing in particular on the drug regimens that
were introduced with this national program. We reproduce some of the reactions of
private practitioners to this program, and the drugs used. The following section looks at
Nepal’s failed attempts to produce its own rifampicin, from both the state-run company
Nepal Drugs and from private pharmaceutical companies—both of which were destined
to fail as the national program moved toward international procurement through the
WHO and its Global Drug Facility because of concerns with the quality of the products.
We then look at how the private market for TB drugs has shifted to products procured
and imported from large Indian multinational companies, and to the availability of drugs
in combined forms. This, combined with the success of the DOTS program in Nepal, has
resulted in the availability of fewer company products in the market—a positive develop-
ment from the perspective of attempts to prevent the rise of drug resistance. Finally, we
return to a snippet of ethnography at one of the TB clinics from which drug-resistant
tuberculosis is being treated. That the government-procured drugs had expired here
points to the difficulty of managing second-line drugs.
A V I S I T TO T H E W E S T E R N R E G I O N A L H O S P I TA L
The DOTS clinic in the regional hospital in Butwal took some finding. It is tucked away
out of sight and mind behind the hospital itself. On the walls outside, with their peeling
paint, are posters of the importance of taking the DOTS treatment. The room itself was
well organized, and the clinic seemingly well run. On the walls of the clinic were several
charts of last year’s figures: 217 category-one patients; 87 category-two; 54 category-three.
A list of the various DOTS subcenters within the city was displayed—a mix of state and
NGO-run/privately run institutions: Paropkar Sewa Kendra; the Family Planning Asso-
ciation; Butwal DOTS Centre; Rotary Club of BTL “South”; the Ayurvedic Hospital; Maya
Devi Nursing College. Another large hand-drawn poster showed the quarterly case finding
rates: a pie chart represented the TB patient classification on the basis of treatment cate-
gory; TB patient classification on the basis of age and sex were represented; quarterly
treatment outcomes were displayed. On the table the relevant registers were all neatly
aligned, with the strips of tablets being used for that day placed in boxes. Behind on a
concrete tabletop coming out of the wall were the notes for patients, each with photographs
attached and aligned in compartments by category of treatment: a total of 225 then on
treatment in the city. It was very different from the large public-hospital DOTS center in
Kathmandu that we had visited earlier, which was disordered, unkempt, and uninviting.
The young man responsible for running this clinic had been in charge of the DOTS
program for the last eight months, and he obviously took great pride in his job. He
T B C O N T R O L I N N E PA L A N D T B D R U G P R O C U R E M E N T
The DOTS clinic in Butwal—part of the program into which TP was referred as one of
an estimated forty thousand patients who develop the disease annually in Nepal—and
the drugs to which TP had access were not always at hand. Historically, a sanatorium
established at Tokha, in the northern part of the Kathmandu, was the state’s first attempt
at managing tuberculosis in the 1930s. At the Central Chest Clinic, established in 1951,
the first tentative attempts at diagnosis and treatment were made, with the first systematic
endeavor at organizing the TB control program beginning in 1965 (with an agreement
signed with the WHO and UNICEF).3 Despite this, the implementation of TB control
measures remained sporadic and underresourced. There were a number of international
NGOs and other medically oriented nongovernmental organizations—all poorly centrally
coordinated—that were working in various parts of the country. Attempts at greater
coordination among these organizations, and with the NTP, followed the declaration by
the WHO of tuberculosis as a global emergency in 1993, as the available resources and
political will increased substantially. Within the NTP’s own representation of milestones
of the TB program, the first milestone begins only in 1996, with “DOTS implementation”
(Tuberculosis Control Programme Nepal, 2010).
As soon as DOTS was announced as the WHO-proposed global strategy to deal with
the “global emergency,” Nepal took steps toward its adoption. This strategy emphasizes
case-finding activities using smear microscopy of those suspected of having TB, and then
the administration of a short course of therapy under the “direct observation” of those
responsible to the health system. The DOTS policy, when it was initially introduced,
included five core elements: a political commitment to increasing resources for the fight
against TB as an activity integral to national health systems; sputum microscopy services
so that the disease could be correctly identified; short-course chemotherapy, including
the direct observation of treatment; uninterrupted supply of drugs; and, finally, recording
and reporting systems (Hamlet and Baral 2002).
After this directive to follow the DOTS strategy, by the year 2001 over thirty-one thou-
sand TB patients were registered and being treated under the NTP. By mid-2001 the
DOTS strategy had been rolled out to 227 treatment centers, with 684 subcenters, cover-
ing 84% of the total population across all seventy-five districts in the country. Treatment
success rates of 85% or greater were reported (Hamlet and Baral 2002). We have else-
where written critically of how the categories of entry into the program have almost
P R I VAT E P R A C T I T I O N E R S ’ C R I T I C I S M S O F
T H E D OT S P R O G R A M A N D I T S D R U G R E G I M E N
Despite its self-reported success—in Nepal there was widespread criticism of the choice
of regimen that the national program had initially decided upon when it rolled out the
DOTS program. In particular, the continuation-phase drugs concerned the private physi-
cians we interviewed (quite different from the scenario in India, where the national
program had introduced an intermittent regimen—that is, three times a week—and was
criticized for this reason). A senior well-known TB specialist in Kathmandu explained
that he used a six-month regimen, because he preferred the CP with rifampicin in it. For
this reason, he said, he referred only those who could not afford it into the DOTS program.
He was concerned with the “slightly higher” relapse rates when the CP contained etham-
butol instead of rifampicin. He had talked the issue of rifampicin in the CP over with
many of his colleagues and stated that they shared his concern. Another senior Kath-
mandu chest physician stated that he was somewhat suspicious of the cure rates claimed
by the DOTS program. He also gave rifampicin to all his patients throughout the full
regimen, and because he was responsible for the treatment of army personnel with
tuberculosis, he had not adopted the Nepal DOTS regimen. He saw the DOTS regimen
in Nepal as an inferior regimen, and was surprised that the patients themselves were not
There had been an attempt to produce TB drugs in Nepal in the early 1990s, as the
country was beginning to strengthen its TB program. Focusing on rifampicin, one of our
key drugs in the research, attempts to produce or package the drug in Nepal for the TB
program had started with Nepal Drugs (or Royal Drugs Nepal, as it was known before
the royal family was overthrown and the country became a republic). It started with sup-
port from the Japan International Cooperation Agency (JICA), which, prior to the advent
of the Global Fund against AIDS, Tuberculosis and Malaria (GFATM), was one of the
major funders and supporters of the TB program. This was before Nepal acquired its
drugs for the national program through the WHO program, via the international Global
Drugs Facility (GDF)—a mechanism that the first WHO TB adviser to Nepal was instru-
mental in setting up in 2001, after he left and went to Geneva. As this adviser suggested
in an e-mail interview, this production of rifampicin was an attempt to introduce short-
course chemotherapy into the NTP, which until then had been using the standard regi-
men. The Japan Pharmaceutical Manufacturers Association (JPMA) had suggested that
they shift from supplying the capsules to providing technical assistance so that Royal
Drugs Nepal could produce their own. With the demand for rifampicin exceeding supply,
the NTP also started procuring the drug from other international suppliers at this time.
In addition, a WHO official we interviewed told us, “Nepal wanted to move toward using
Fixed Dose Combinations (FDCs) in line with international recommendations, but JPMA-
donated rifampicin was not allowed to be combined, and Royal Drugs Nepal did not have
the capacity to make FDCs anyway. With support from the Norwegian Heart and Lung
Foundation (LHL) and later from the British Department for International Development
(DFID), there was a move to international competitive bidding for TB drugs.”
The WHO official we interviewed felt that it was the rise of FDCs and the shift to
international procurement that caused this attempt to flounder. An employee of Royal
Drugs at the time agreed with this assessment: “Due to new inventions on TB drug, a
combined form of drugs was developed by Indian companies and multinational compa-
nies, and this was supported by WHO and other donors. In my opinion, this is the main
cause for not continuing rifampicin production in Nepal. . . . As the WHO and donor
organizations decided to buy combined form into one single capsule, we could not pro-
duce such sophisticated types of medicine.”
This attempt by Nepal at packaging its own rifampicin also became embroiled in
political fallout when an editorial published in the Lancet suggested that this availability
of uncombined rifampicin could create conditions that would lead to the rise of resist-
ance (Fryatt 1995). The editorial was published at the same time that the NTP was about
to move toward DOTS and direct observation of therapy, but the move was still in its
nascent phase. The minister for health at the time, whom we interviewed around the
event, was still angry at the publication of the editorial, and felt that this was an irrespon-
sible act. Although the JPMA had wanted to support the production of combined tablets,
T H E P R I VAT E M A R K E T F O R T B D R U G S I N N E P A L
There have been significant shifts in the availability of anti-TB medicines in Nepal since
the introduction of the DOTS program. The market is now totally dominated by a few
Thus the market for TB drugs has shifted, and in direct consequence of two major fac-
tors: first, the running of the DOTS program, and second, the increased availability of
combined TB drugs and those in “strips,” both types supplied by Indian companies. Those
few companies that still maintained a hold in the Nepal marketplace for TB drugs talked
of differing strategies for keeping their products competitive. For example, Concept
Our pharmaceutical marketing is doctor oriented. We visit doctors and promote our prod-
ucts, and we need to convince them. And once doctors are convinced and such patients
come to them, the doctors prescribe the products, the prescription goes to the retailers,
and the retailer demand those products from us. But for TB, doctors do not prescribe TB
drugs because the government has published the notice that they should send those
patients for DOTS. They get free drugs, why should they buy them? And some patients
cannot afford it because of their economic condition. Generally, doctors prefer sending TB
patients for DOTS rather than to retailers’ shops. Some patients who want to hide their
disease, or who have high social status, go to private consultants and buy these TB drugs
from retailers. But there are very few like them.
The company had introduced second-line drugs as well, but already their sales were
decreasing after the NTP introduced its nationwide attempt at treating MDR patients
through the national system. As he explained: “Before the launching of DOTS-Plus, the
sales were high. After its launch, the sales really decreased. At that time, no one else has
distributed their drugs and we had no competitor, and patients were bound to buy it for
cure. Everyone wants to live longer. After the launch, we do not have sales. They are
distributing it for free.”
Yet to maintain their share in the market, Macleods made sure that certain other
forms of interaction with doctors still took place. One medical representative
explained how they incentivized the chest physicians who used their anti-tuberculosis
products:
Yes, we also fund conferences and provide air tickets and accommodation to the doctors
when they go to attend workshops and conferences in India, but these are for doctors who
prescribe our products. We give them gifts according to the prescriptions issued by them
per month or per annum. . . . Every year Dr. X “demands” to be given a book that is not
available here, but apart from that we also give him bags and other “small gifts.” . . . We
have a sort of “contract” with Dr. Y. Just a few days ago I handed him a check for five thou-
sand rupees, and sometimes the check amount may be up to twenty thousand rupees. In
fact Dr. Y was asking for twenty thousand rupees a few days ago. . . . Apart from that we
also give him other “small gifts” like bags.
In our previous work we have looked at these patterns of incentivization in the Nepal
pharmaceutical sector, and at how the state attempted, and failed, to regulate these mar-
keting practices through the production of a set of ethical guidelines (Harper, Rawal, and
Subedi 2011). Here we point out that this is one of the methods that pharmaceutical
companies use to maintain their presence in the market with certain key prescribers.
In the final section we turn to the issue of MDR-TB and its treatment.
The rise of drug resistance in Nepal has been (mercifully) slow, in comparison to many
other countries—South Africa and the former Soviet Union, for example—but the avail-
able figures are difficult to interpret in terms of trends. According to the 2010–15 national
strategic plan for Nepal, new cases of MDR-TB in Nepal have oscillated from 1.1% (of all
those diagnosed with TB) in 1996–97, to 3.7% in 1998–99, to 1.3% in 2001–2, and up
to 2.9% in 2006–7. The rate is higher among retreatment cases, with an estimate of
11.7% (Tuberculosis Control Programme Nepal, 2010).
The national Nepal MDR-TB treatments started in 2005 as the DOTS program
expanded into the broader STOP TB program, and with WHO Green Light Committee
(GLC) approval, which meant that the program was given the green light to treat 350
MDR-TB patients over a two-year period. After two international reviews—the WHO
maintains a tight control over who is allowed to roll out MDR treatments—the GLC gave
permission for a further 1,200 MDR-TB patients over the course of four years. A grant
from UNITAID was secured to fund this program. Nepal thus became the first country
in the world to develop a countrywide MDR strategy. By 2010 there were twelve treat-
ment centers for MDR (with fifty-four subcenters) across the country and 910 patients
registered for treatment (NTC 2011).
The regimen was decided as follows: an intensive phase (eight to twelve months)
consisting of kanamycin (KM), pyrazinamide (Z), ofloxacin (Ofx), ethionamide (Eto), and
cycloserine (Cs); and a continuation phase (sixteen to twenty months) of pyrazinamide
(Z), ofloxacin (Ofx), ethionamide (Eto), and cycloserine (Cs). By 2008, 494 MDR TB
cases were registered for this treatment, with an initial cure rate of 70% (for the eighty-
eight patients who completed treatment) (Tuberculosis Control Programme Nepal,
2010).
In November 2007 we visited a DOTS clinic in one of the capital’s main public hos-
pitals, where MDR treatments were dispensed. Compared with the Butwal clinic
described earlier, this clinic was far less tidy. Near the window on the counter, eight boxes
were piled up haphazardly. Each had a label on it that read “Humanitarian Donation
from the WHO,” with an International Dispensary Association (IDA) label on it. The
donations had been procured through the GDF for the DOTS-Plus program, and had
been delivered through Thai Airways. On the table was a referral form, two disposable
syringes, a register, and a small notebook to jot down the names of the patients who came
to take the medicines each day. Two calendars were hung on the wall—one from Everest
Pharmaceuticals, and the other from Deurali-Janta Pharmaceuticals.
The counter near the window had pockets where DOTS medicines could be stored:
ethambutol 400mg/isoniazid 150 (Cadila), rifampicin 150mg/isoniazid 75 (Svizera),
pyrazinamide 400 (Cadila), ethambutol 400 (Svizera), RIFA-CTL 150 (CTL)—this had
expired earlier in the year but had not been disposed of. All had been procured through
the GDF. A small box contained drugs for MDR treatment: ofloxacin 200 mg (Microlabs),
CONCLUSIONS
Much has been written about DOTS, both positive and negative, and the policy has divided
academics, policy makers, and practitioners (Ogden, Walt, and Lush 2003). On the one
hand, this vertical policy—that is, one addressing a single disease rather than broader
health-system strengthening—has been seen as successful within the terms of its own
NOTES
This chapter emerged from the collaborative research project “Tracing Pharmaceuticals in
South Asia” (2006–2009) that was jointly funded by the Economic and Social Research
Council and the Department for International Development (RES-167-25-0110). The project
team comprised Soumita Basu, Gitanjali Priti Bhatia, Samita Bhattarai, Petra Brhlikova, Erin
Court, Abhijit Das, Stefan Ecks, Ian Harper, Patricia Jeffery, Roger Jeffery, Rachel Manners,
Allyson Pollock, Nabin Rawal, Liz Richardson, Santosh M. R., and Madhusudan Subedi.
Martin Chautari (Kathmandu) and the Centre for Health and Social Justice (New Delhi) pro-
vided resources drawn upon in the writing of this paper. Neither the ESRC nor DfID is respon-
sible for views advanced here.
1. The “first-line drugs” are as follows: isoniazid (H), rifampicin (R), ethambutol (E),
pyrazinamide (Z), and streptomycin (S). “Second-line drugs” include kanamycin (KM); ami-
kacin (AMK); capreomycin (CM); the quinolones (FQ)—Cipro, Ofx, Gfz, Mfx; the thiamides
(ethionamide or prothionamide); cycloserine (CS); and para-aminosalicylic acid (PAS). (The
abbreviations are those currently used by the WHO.)
2. In “Tracing Pharmaceuticals in South Asia” we mapped patterns of production, distribu-
tion, marketing, and retail of three key generic drugs (oxytocin, rifampicin, and fluoxetine) in
three regions of South Asia (Nepal, West Bengal [WB], and Uttar Pradesh [UP]). We drew on
qualitative data using semistructured interviews—in particular, with producers, medical rep-
resentatives, pharmacists (including distributors and retailers), and providers (including
qualified and unqualified prescribers). Topics included questions about the everyday working
practices of the interviewees, with specific questions about our focus drugs—here rifampicin
and other associated TB drugs. We asked about substandard and counterfeit medicines; pat-
terns of supply; prescriptions by certified and noncertified medical practitioners; and over-the-
counter sales by pharmacists. Since each of the drugs is inserted in different ways into national
and international health programs, and drug-procurement procedures differ widely, we also
interviewed donor agencies and health activists about how they saw the problems posed by
the supply chains and the distribution and consumption patterns of each of the three drugs.
Over 80 percent of the interviews were recorded, transcribed, and (where necessary) translated
into English by the research assistants. In each site we also took whatever opportunities were
presented to observe interactions among key members of the field—providers with clients
and medical representatives, for example. All unrecorded interviews, and any observation
material, were noted down (either at the time or immediately after) and typed up in as much
detail as possible as soon as we were able to reach a computer. Because of the roles played by
REFERENCES
João Biehl
251
18,000
15,000
12,000
Lawsuits
9,000 Lawsuits for
Medicines
All Health-Related
6,000 Lawsuits
3,000
0
2002 2003 2004 2005 2006 2007 2008 2009
Year
figure 13.1
Health lawsuits, Rio Grande do Sul, 2002–9.
“ I O N LY J U D I C I A L I Z E T H I S M E D I C I N E B E C A U S E I W E N T I N T O
D E B T P AY I N G F O R I T ”
T H E J U D I C I A L I Z AT I O N O F B I O P O L I T I C S
Our research team moved across domestic, clinical, judicial, and administrative domains
to track the interconnection of sites and the interplay of scales that the judicialization of
health calls on and calls into question (Biehl 2013). And while examining the tense nego-
tiations of the Brazilian constitutional right to health in daily life, I often had a sense of
social roles and political positions out of place: of the judiciary as a sort of pharmacy, the
public defender as a physician, the physician as an activist, the patient association as legal
counsel, and the patient-citizen becoming the consumer—among other translocations
and displacements.
I found Michel Foucault’s (2008) tentative reflections on biopolitics and neoliberal-
ism helpful as I tried to understand the form and reach of these novel medico-socio-legal
F R O M T H E R I G H T TO H E A LT H TO T H E R I G H T T O
PHARMACEUTICALS
Even if only cursorily, let me first place these realities and claims in historical context.
Two concurrent and paradoxical trends informed the structure of Brazil’s Unified Health
System (SUS), which extended health coverage to all citizens in the late 1980s: on the
T H E M Y T H S O F J U D I C I A L I Z AT I O N
T H E J U R I D I C A L H O S P I TA L
Patients in our sample of 1,080 lawsuits were, for the most part, chronically ill. Almost
half of patients (48 percent) reported cardiovascular disease, diabetes, disorders of the
lipid metabolism, and pulmonary diseases. Some 16 percent of the patients reported
neurologic and psychiatric conditions. Patient-plaintiffs in our sample had various comor-
bidities and procured multiple drugs for their treatments. On average, they reported 1.5
diagnoses and requested 2.8 drugs. Among the twenty-five most requested drugs, twenty-
three were medicines to treat chronic diseases, and only seven were not on official drug
formularies. However, we also found patients with a single disease who demanded one
high-cost treatment.
Patients with chronic hepatitis C, for example, made up a significant number of cases.
These patients typically demanded ribavirin and peginterferon alfa, both of which are on
the federal government’s exceptional-medicines formulary. The high frequency of
requests for drugs to treat chronic hepatitis C in our sample stands in sharp juxtaposition
to the rare request—one single case—for medicines for HIV/AIDS. Both pathologies
have a similar prevalence in the south of Brazil, and both treatments are distributed by
governmental programs at no cost.
What are some of the possible reasons for this sharp contrast?
It may reflect variations in the efficiency of governmental pharmaceutical-distribution
programs. Whereas the strategic-medicines program that distributes HIV/AIDS drugs is
centrally managed and funded by the federal Health Ministry, with a single acquisition
process for the entire country, the exceptional-medicines program is decentralized: it is
managed by states that are federally reimbursed. The latter program depends on admin-
istrative cooperation among federal and state governments and is vulnerable to the vagar-
ies of regional health policy and management.
The contrast may also result from the specific eligibility criteria and, in some cases,
from the detailed treatment protocols through which exceptional and special medicines
must be accessed in the public health-care system. When patients fall outside of eligibil-
ity requirements and protocols, they may use lawsuits to access treatment. In addition,
patients who were granted requests may use lawsuits to expedite treatment delivery or to
guarantee provision of medicines when the government fails to provide them.
Lawsuits may be a mechanism with which to challenge treatment protocols that
2 60 • JOÃO BIEHL
T E M P O R A RY C O L L E C T I V E S
The next story I want to tell suggests new social forms emerging on the interface of right-
to-health litigation, medical technology, and the state. Where institutions fail, communi-
ties articulate fragile and short-range solutions that nevertheless demonstrate that social
ties are often the last and best resource in the face of disregard and death.
Sixteen-year-old Leticia and nine-year-old Katiele are the daughters of a migrant fam-
ily that lives on the outskirts of Porto Alegre. Both suffer from Phenylketonuria, or PKU,
a metabolic genetic disorder. The difference is that the younger sister, Katiele, was imme-
diately diagnosed and treated with a combination of diet and medication, whereas Leti-
cia, who now suffers from severe mental retardation, was not. Leticia was diagnosed only
because when her sister was born screening had become mandatory, and the special baby
formula needed to prevent the development of the disease had become universally avail-
able via SUS.
In the state of Rio Grande do Sul, about 120 patients need this formula. But given
distribution problems, twenty-five families had to file lawsuits to ensure access. We inter-
viewed all these litigant families, who, for the most part, live in the interior and are in
fact poor. Like Marizete and Neri (Leticia and Katiele’s parents), they all have had low
levels of formal education. But this does not stop them from judicializing.
Leticia and Katiele’s family receives the formula through administrative procedures,
but they decided to file lawsuits to obtain special food (such as pasta and flour), which is
vastly more expensive than the common food that the sisters are not allowed to eat, and
which took up much of the family’s budget.
Because the state failed to make the formula available, the parents also thought about
judicializing it. At the very last moment, however, the family decided not to do so because
Dr. Paula Vargas, the girls’ beloved physician, and other families lent them formulas till
distribution resumed. As Marizete puts it, “Mothers help each other. When one gets
something she teaches the others. So one keeps helping the other, until we get it.”
In this example, the family of Leticia and Katiele found something that they identified
as more useful than or preferable to judicialization: a caring health professional and a
social network.
Rather than turning to the courts, Dr. Vargas helped to create and sustain solidarity
networks among her patients, facilitating the sharing of the formula when it was missing,
and mutual support among families living with PKU: “When the formula is lacking, fam-
ilies can call me anytime and I’m sure I can do something even when the state is not doing
its job. These patients simply cannot go without the treatment. It would be a crime.” Right-
to-health lawsuits give us only a partial view of the therapeutic trajectories of patients and
their families: new sociomedical forms also become a kind of para-infrastructure for access
to treatment and care. Without this, Dr. Vargas says, “many more would judicialize.”
As the cases of Edgar and of Leticia and Katiele show, the booming number of right-
to-health lawsuits not only points out the weakness of public-health administration and
policy in Brazil and that the judiciary has indeed become a powerful purveyor of medical
technology access, but also puts into focus a widespread reductionist approach to health
care. The needs of patients are not addressed holistically, and in spite of the universality
of health care, its delivery is stuck in an access and volume mind-set, rather than focusing
on the value of interventions to patients and families over time (Kim, Farmer, and Porter
2013).
OPEN-SOURCE ANARCHY
2 62 • JOÃO BIEHL
budgets and increases inequalities in health-care access. Yet many local judges working
on right-to-health cases feel they are responding to state failures to provide needed med-
icines and that these waves of lawsuits are a milestone in the democratization of a culture
of rights. For these judges, the poor Brazilians who are working through modes of legally
arbitrated justice to access health care are not just fighting against legalized privileges
and legitimated inequalities, as in James Holston’s (2009) chronicle of “insurgent citi-
zenship” practices in Brazil’s new urban spaces. Rather, the judges see widespread litiga-
tion as the expression of a distinct, equalizing legal system and of a novel rights-con-
scious society. Whether such a democratization of socioeconomic rights can be attained
through individual claims and in courts, however, is contested.
District judge Eugenio Terra, who is in charge of all health-related cases in Porto
Alegre, does not agree that the judiciary is exceeding its role. In line with the experience
of attorney Souza at the Public Defender’s Office, he, too, finds that lawsuits are filed
largely by poor and desperate patients seeking treatments that should be available in the
public system. “I am doing social justice, one by one,” he told me in an interview in
August 2011. “When I am issuing an injunction for cancer-treatment provision, I am also
indicting services that have not kept up with people’s needs.”
Rather than accepting one-size-fits-all medical protocols, judges give broad deference
to individual circumstances and physicians’ prescriptions—a practice that may appear to
undercut state efforts to rationalize pharmaceutical use. State high-court judges like
Denise Oliveira Cezar are also holding pharmaceutical companies accountable, particu-
larly to patients participating in clinical trials. As she puts it, “We struggle for jurispru-
dence. We are challenged to create the right and to enable the person of rights.”
If access to AIDS therapies was the litmus test of the right to health in the 1990s, it
is access to genetic therapies now. The last story I want to tell is that of twelve-year-old
Alexandre Lima de Moura, who suffers from mucopolysaccharidosis (MPS), an inherited
metabolic disorder. Every week, the fourth-grader travels with his mother, Cleonice, to
Hospital de Clinicas in Porto Alegre, where he receives enzyme-replacement therapy—a
treatment that costs about two hundred thousand dollars per year. Because of his age,
Alexandre was not allowed to enroll in a clinical trial taking place at the hospital. Without
“the right to be researched,” as the mother of another MPS patient put it, Alexandre
became a patient litigant.
With the legal support of a well-organized patient association in São Paulo (partially
funded by the drug manufacturer), the family won a court injunction forcing the federal
government to begin providing the therapy. Like all parents of MPS children we spoke
to, Cleonice suggested that not obtaining this treatment would be unconscionable and
tantamount to killing her child. She knew that the federal attorneys would appeal and
was ready for the struggle: “Besides entering the judiciary, we also entered the media.”
Cleonice has taken Alexandre’s cause to all possible media outlets and is also using his
condition to educate neighbors, local medical personnel, and officials about the meaning
of, in her words, “citizenship” and a “normal life.” “Ela é uma mãe boa” [She is a good
T H E R I G H T TO A N O N P R O J E C T E D F U T U R E
There is a heated debate in Brazilian courts on the positive duty the constitutional right
to health imposes on the state and the extent to which the courts must enforce this right.
But the country lacks a substantial public debate about the meaning of the right to health
in light of medical advancements and financing, between what is possible and feasible
and what is frugal and essential. As a “right to pharmaceuticals” is consolidated in Brazil,
the various branches of government have yet to develop a systematic approach to tackling
drug costs and financing or to determine the responsibilities of private health-insurance
plans in covering drug costs and medical services. Local governments should certainly
track court cases and use them to inform efforts to remedy specific disease policies,
administrative shortcomings, and poor public-health budgetary planning. Attention is
also needed to broader aspects of the right to health, including interventions that tackle
the social and political determinants of health such as education, water, sanitation, vector
control, air pollution, and violence prevention, as well as access to justice.
As for our understanding of the ever-growing and complex judicialization of the right
to health, I believe that field research has much to contribute and that ethnography can
work as an early warning system. People on the ground recognize what’s troubling them.
And it is somewhere in the middle of their social lives that our critical work begins. Eth-
nographers are uniquely positioned to see what more categorically minded experts may
overlook—namely, the empirical evidence that emerges when people express their most
pressing and ordinary concerns, which then open up to complex human stories in time
and space that should be the center of public debate and action.
The judicialization of the right to health has become a para-infrastructure in which
various public- and private-health actors and sectors come into contact, face off, and
enact limited “one by one” missions. There is no pregiven biopolitical population in
Brazil today to which Edgar, Leticia, Katiele, Alexandre, and thousands of other atomized
subjects of rights belong. Seen from the perspective of these medical subjects and their
2 64 • JOÃO BIEHL
fragile collectives—undesirable, according to actual care-delivery policies, budgets, and
state public-relations efforts—biopolitics is an insecure enterprise—indeed, more a
symptom of the limits of government than a marker of its presence and control. The
ethnographic realities presented throughout this chapter also suggest that the subject of
rights and the economic subject may actually be included or excluded according to
shared or similar logics, practices, technologies, and knowledges, and that the pursuit
and enforcement of rights may be a key means by which one becomes part of a market
segment.
If, for Foucault, “the question of the frugality of government is indeed the question of
liberalism” (2008, 29), then in Brazil’s late-liberal moment, one could argue, the biopo-
litical question is not necessarily about the “futility” of the rehabilitation of diseased and
underserved poor subjects but about the expansion of frugal government in the form of
pharmaceutical access in lieu of infrastructural reform. Thus, in this contemporary
republic of interests, we see the consolidation of “state activism without statism” (Arbix
and Martin 2010, 6) coupled with extraordinary market expansion and the vanishing of
“civil society” as a viable transactional reality.
Yet people refuse to be stratified out of existence. The humanism and in-your-face
politics of public defenders such as Paula Pinto de Souza (whom I briefly introduced you
to) produces a pathway to improving patients’ situations. Against institutional realities
that undermine health, control, and effectiveness, public defenders utilize medical and
legal modes of veridiction and the framework of constitutional rights and human dignity
to sustain their work and demand that the state act biopolitically. Chronically ill and poor
people find their way into the judiciary reluctantly, tinkering with available human and
material resources. They are neither governable nor disruptive of the system. This min-
imum biopolitical belonging is part and parcel of the immanent field people invent to
live in and by as they navigate the vagaries of market inclusion and survival in wounded
cities.
The hard-to-pin-down patient-citizen-consumers to whom I introduced you speak to
novel forms of social becoming at the interface of law and medicine, and their medico-
legal trajectories show that politics matters differently to a growing number of low- and
middle-income sick Brazilians. People’s life chances and health outcomes are overdeter-
mined by the kinds of marketized juridical subjects they are able to become through
appeals to the judiciary, government, and research and health industries driven by profit
and the construction of new therapeutic market segments. As ethnographers, we must
attend to the forms of statecraft (national and regional) and jurisprudence as well as to
the kinds of medico-scientific literacies and political subjectivities that are built into the
para-infrastructure of rights and interests that the judicialization of health has occa-
sioned. We must consider both the possibilities opened up and the exclusionary dynam-
ics at work at the judicialization front evident throughout Brazil and in other emergent
economic powers. It is, paradoxically, by revealing the fragility of biopolitical interven-
tions, showing how they are constantly entangled with and shaped by other (often
N OT E
I want to express my deepest gratitude to Torben Eskerod for his powerful photographic work
and to Joseph J. Amon, Mariana P. Socal, and Adriana Petryna for all their creative insights
and wonderful help with this research project. I also want to thank Alex Gertner, Joshua Fran-
klin, Peter Locke, Alexander Wamboldt, and Igor Rubinov for their help, which has been
particularly important. The Ford Foundation and Princeton’s Health Grand Challenges Ini-
tiative and the Woodrow Wilson School of Public and International Affairs generously sup-
ported research. Sections of this chapter appeared in American Ethnologist 40, no. 3 (2013):
419–36.
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Arbix, Glauco, and Scott M. Martin. 2010. Beyond Developmentalism and Market Fundamen-
talism in Brazil: Inclusionary State Activism without Statism. http://law.wisc.edu/gls
/documents/paper_arbix.pdf. Accessed April 21, 2013.
Azevedo, Solange. 2007. Remédios nos tribunais. Revista Época, December 12. http://
revistaepoca.globo.com/Revista/Epoca/0,,EDG80696–8055–501,00-REMEDIOS+NOS+
TRIBUNAIS.html. Accessed April 21, 2013.
Biehl, João. 2005. Vita: Life in a Zone of Social Abandonment. Berkeley: University of Cali-
fornia Press.
———. 2007 Will to Live: AIDS Therapies and the Politics of Survival. Princeton, NJ: Princ-
eton University Press.
———. 2013 The Judicialization of Biopolitcs: Claiming the Right to Pharmaceuticals in
Brazilian Courts. American Ethnologist 40 (3): 419–36.
———. N.d. Right to Health Litigation. http://joaobiehl.net/global-health-research/right-to-
health-litigation/. Accessed November 24, 2013.
Biehl, João, Joseph J. Amon, Mariana P. Socal, and Adriana Petryna. 2012. Between the Court
and the Clinic: Lawsuits for Medicines and the Right to Health in Brazil. Health and Human
Rights 14 (1): 1–17.
2 66 • JOÃO BIEHL
Biehl, João, and Ramah McKay. 2012. Ethnography as Political Critique. Anthropological
Quarterly 85 (4): 1211–30.
Biehl, João, and Adriana Petryna. 2011. Bodies of Rights and Therapeutic Markets. Social
Research 78 (2): 359–86.
Biehl, João, Adriana Petryna, Alex Gertner, Joseph Amon, and Paulo Picon. 2009. Judicialisa-
tion and the Right to Health in Brazil. Lancet 373:2182–84.
Borges, Danielle da Costa Leite, and Maria Alicia Dominguez Ugá. 2010. Conflitos e impasses
da judicialização na obtenção de medicamentos: As decisões de 1a instância nas ações
individuais contra o Estado do Rio de Janeiro, Brasil, em 2005. Cadernos de Saúde Pública
26 (1): 59–69.
Chieffi, Ana Luiza, and Rita Barradas Barata. 2009. Judicialização da política pública de
assistência farmacêutica e eqüidade. Cadernos de Saúde Pública 25 (8): 1839–49.
Collucci, Cláudia. 2009. Triplicam as ações judiciais para obter medicamentos. Folha de São
Paulo, January 9. www1.folha.uol.com.br/fsp/saude/sd0901200901.htm. Accessed April
21, 2013.
Comaroff, John, and Jean Comaroff. 2006. Law and Disorder in the Postcolony: An Introduc-
tion. In Law and Disorder in the Postcolony, edited by Jean Comaroff and John Comaroff,
1–56. Chicago: University of Chicago Press.
———. 2011. Theory from the South; or, How Euro-America Is Evolving toward Africa.
Boulder, CO: Paradigm.
Constituição Federal do Brasil. 1988. http://dtr2004.saude.gov.br/susdeaz/legislacao
/arquivo/01_Constituicao.pdf. Accessed April 21, 2012.
Das, Veena. 2007. Life and Words: Violence and the Descent into the Ordinary. Berkeley:
University of California Press.
Da Silva, Virgilio Alfonso, and Fernanda Vargas Terrazas. 2011. Claiming the Right to Health
in Brazilian Courts: The Exclusion of the Already Excluded? Law and Social Inquiry 36 (4):
825–53.
Diniz, Debora, Marcelo Medeiros, and Ida Vanessa D. Schwartz. 2012. Consequences of the
Judicialization of Health Policies: The Cost of Medicines for Mucopolysaccharidosis. Cad-
ernos de Saúde Pública 28 (3): 479–89.
Edmonds, Alexander. 2010. Pretty Modern: Beauty, Sex, and Plastic Surgery in Brazil. Durham,
NC: Duke University Press.
Fassin, Didier. 2007. When Bodies Remember: Experiences and Politics of AIDS in South
Africa. Berkeley: University of California Press.
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of Military and Humanitarian Interventions. New York: Zone Books.
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University Press.
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Health Inequities? Health and Human Rights 11 (2): 33–45.
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———. 2008. “Global Health Jurisprudence: A Time of Reckoning.” Georgetown Law Journal
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2 68 • JOÃO BIEHL
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2002 to 2007. Revista de Saúde Pública 43 (4): 674–81.
Vieira, Fabiola Sulpino, and Paola Zucchi. 2007. Distorções causadas pelas ações judiciais à
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More Justice to Health? Cambridge, MA: Harvard University Press.
Adriana Petryna
“Do you know,” I hear, said into my ear, “my faith in you is very limited. You have
been shaken off from somewhere, you have not come here on your own two
feet. Instead of helping me, you make my deathbed more narrow.”
R E C O V E RY ’ S P E R I L S
270
unthought with respect to quality, as I suggest in this chapter, is a meaningful narrative
of the “morality” of medical recovery. While cost-effectiveness research, mandated by the
new legislation, gains a more prominent role, such research largely focuses on a collec-
tive optimality, not on an individual one.
In this essay I argue that quality is more than a research matter, a metric of savings,
or a question of coverage or even of patients’ access to medical goods. I suggest that the
focus on quality should prompt a reimagination of the ways we see and think about
recovery, the missing coordinate in current health-reform debates that is also an urgent
moral and scientific domain. The “true north” of my argument is not health or rescue at
all costs but a conversation about what the new constellation of quality might look like
and how patients can engage this constellation as a less costly and more obvious set of
rights of recovery.
The “measure of health,” wrote medical philosopher Georges Canguilhem (2008), “is
a certain capacity to overcome crises and to establish a new physiological order, different
from the old. Health is the luxury of being able to fall ill and recover” (132; italics mine).
This essay juxtaposes this idea of health as luxury with the unbearable cost of survival in
a variety of industrialized medical settings. It asks, What insures not only the right to
health but also a right to heal, or a right of exit from one’s disease? What is a right of
recovery? In invoking such a right, I do not mean to attribute omnipotence to the medi-
cal profession (which it does not possess). Rather, I highlight the moral challenges asso-
ciated with recent mandated shifts from volume-based to quality-based conceptions of
health care, of harnessing therapeutic potential in a wide range of patients and circum-
stances.
This harnessing of therapeutic potential becomes even more complicated in global
health, where responses to epidemics such as AIDS have been considerable but where a
citizen’s right to health (mandated by over one hundred national constitutions world-
wide) often equates with a citizen’s right to pharmaceuticals. Varieties of therapeutic
agents and medical authorities proliferate, from physicians working in clinics to judges
ruling on medicinal claims in courts and physician-researchers providing temporary
care, albeit through an experimental compound, in global clinical-trial settings that are
nested in local public-health facilities.2 State public-health obligations move from clinics
and patient–doctor relations to “outsourced” institutions—transnational and nongovern-
mental organizations to be sure, but also state judicial and local experimental public/
private domains. As the trajectories of patient-subjects and patient-litigants considered
in this essay suggest, these “paramedical” health-care settings are, for better or worse,
acting as surrogates for treatment access in Brazil and Eastern Europe—two regions
about which I have the most ethnographic knowledge and familiarity.3
This essay captures some of the therapeutic dynamics of these “proxy” terrains of
health access, where patients experience medical attention episodically (registered in
terms of medicinal legal cases won or clinical trials accessed) and where powerful thera-
peutic misconceptions are often at play. Clinical trials in Poland and right-to-health
“ I D O N ’ T S E E PAT I E N T S , I S E E D ATA”
In the early 1990s, an unprecedented space of opportunity opened up in Poland and for
Poland’s health-care workers such that up until the mid-2000s, Poland and the rest of
Eastern Europe would occupy a major share of what is known as the global clinical-trial
market (Petryna 2009). Available technical expertise, English proficiency, and high rates
of certain untreated disease as well as centralized public-health systems that could more
easily become functional clinical-trial platforms meant that drug companies would annu-
ally invest almost half a billion dollars each in clinical research in Poland (a country with
one of the lowest shares of public expenditure on health in the Organisation for Economic
Co-operation and Development countries). Trials for everything from hypertension treat-
ments to high-risk surgical techniques moved to Poland and other Eastern European
countries, providing data for drug approvals from the U.S. Food and Drug Administration
or the European Medicines Agency while transforming public health care in these coun-
tries into an ever-greater mosaic of private-sector involvement and mounting patient
demand for new drugs.
Dr. Jiri Stanek, a Czech public-health specialist I interviewed in 2006, was a clinical-
trial market insider and an expert on how such markets rise and fall. He got his start in
the early 1990s by turning ailing but centralized public-health systems into nominally
functional clinical-trial platforms.11 “For companies it was cheap. They got good data
quick. There was a need for services, and all of a sudden Western companies realized the
huge potential here. Our population was not treated by remedies that were available in
the West. So it was all quite attractive. We had many untreated populations. There were
treatment-naive, steroid-naive, statin-naive people—people you could hardly find in the
U.S. or Western Europe. We had extremely high recruitment rates,” he told me.
Trials had become so pervasive, particularly in cardiology- and oncology-related serv-
ices, that by the end of the 1990s roughly 30% of expenditures on oncological treatment
in Polish hospitals were covered as part of a clinical-trial program.12 Yet Stanek also
hinted that each stage of developing clinical-trial markets involved an unscripting of
patients from their roles. He pointed out that clinical-trial subjects as a general rule are
only “temporarily loyal,” and that after a while “they no longer see the immediate benefit
“ TA K E C A R E O F M E ”
Inês kept saying to me, “I am a number, I am just a number there.” She is a fifty-five-
year-old Brazilian mother of four daughters who for the last decade has suffered from an
untreatable and often fatal lung disorder (a type of pulmonary hypertension) that is resist-
ant to current treatments. Once she learned that her breathing difficulties were linked to
this particularly rare disorder, she was able to find a specialist through a network of fam-
ily and friends. Inês tried the standard plan of medical care, but it did not work for her.
To help with her symptoms, she took five other medications. In 2008, her pulmonologist
invited Inês to participate in a clinical trial for a new medicine for someone with her exact
medical condition. Knowing that Inês was a “good” patient (she was reliable and compli-
ant), the doctor pressed Inês hard to join the trial, which he told her would be of benefit
to her medically. The trial had a placebo arm. And, after much discussion in her family,
Inês decided to join the trial because she “trusted the doctor,” she told me.
For the first three months, the study was double-blind, meaning that no one, includ-
ing the patient-subject and the physician-researcher, would know who was on the placebo
and who was on the active arm. After three months, patients would learn who was getting
what. Complications began to arise. Inês, the once-trusted patient, stopped taking the
experimental pills that she had been given. “The doctor chastised me. He told me that I
couldn’t come back to the clinic with all these leftover pills.” Every pill Inês took or didn’t
take was counted. “I told my doctor that I am taking too many pills already, a diuretic, a
heart pill, a high blood pressure pill, I can’t take any more pills!” Her doctor responded,
“If you are going to skip any medicines, skip the ones you are taking now, not the experi-
mental one!”
I realized in the course of our discussion over unconsumed pills that she was staging
a “noncompliance” as a way of leveraging the doctor’s care and commitment to her well-
being—to reinstate a doctor–patient relationship. Inês continued to be a “deviant” sub-
ject in exchange for having “given up” her sick role. But when she discovered (given her
palpable improvements) that she was probably not on the placebo arm, she understood
that she may not have a sick role to return to, in part because of the overwhelming cost
of the medicine she was being tested with. As she told me, “I asked the doctor, ‘What
happens to me afterwards? Who is going to take care of me? I’ll take your pill only if you
guarantee that I will get it after the trial ends.’ ”
Faced with disappearing avenues of care, her question rises to a level of quiet revolt. In
his short story A Country Doctor, Franz Kafka ([1919] 1997) describes a hapless doctor
AT T E M P T E D E X I T
Inacio Santos is a fifty-six-year-old former bank employee and public servant residing in
a small town in Brazil’s interior. I met him in 2008 in the Center for Clinical Genetic
Excellence at a large hospital in the capital of the southern state of Rio Grande do Sul,
where he traveled bimonthly to be medically monitored and to receive clinical care and
support from a group of talented clinical geneticists. Since adolescence, Inacio suffered
from a rare genetic disorder that had for years gone undiagnosed. The disease is merci-
less. According to one clinician, “Patients complain of extreme pain and numbness in
hands and feet. They usually survive into adulthood but they are at an increased risk for
strokes, heart attacks, and kidney failure.” Moreover, symptoms of the disease are not age
dependent: “A twenty-five-year-old might suffer from end-stage renal failure; a forty-five-
year-old may just be starting on hemodialysis.” Often patients have gone undiagnosed
because the “disease is unknown to many physicians. Many times, their complaint of
pain is brushed off as psychosomatic.”
That was fortunately not the case for Inacio. Before coming to this center of genetic
excellence, Inacio was under the care of a private endocrinologist in his hometown who
took an active interest in his case and provided him with symptom relief and palliative
care. Inacio spoke admiringly of him: “When I had the money, I paid, and when I didn’t
have it, he saw me anyway.” Once Inacio landed a steady job as a public servant, half of
his medical expenses were paid. Not knowing what disease Inacio had, the doctor “taught
me how to live with the disease” nonetheless. The day he figured out that Inacio’s afflic-
tion had a genetic root and no known cure, he referred him to the Center for Clinical
Genetic Excellence, a key referral center, which biotechnology companies coveted as a
site for multinational studies in the area of enzyme-replacement therapy.
When I met him, Inacio was in the midst of navigating a medical and legal quagmire.
The clinical trial he had diligently participated in had been stopped abruptly by the spon-
sors. With the sudden withdrawal of the study drug, he ran the risk of quickly relapsing
to a physical state that was even worse than when he began the trial. The clinician-
geneticists who had initially enrolled him were desperate to figure out some institutional
recourse so as to continue Inacio on the experimental therapy and to protect him from
any damage that was sure to come in its absence.
CONCLUSION
In diverse settings, the project of health has progressively been displaced from the clinic
and the doctor–patient relationship to precarious paramedical settings that themselves
enact distinct moralities that limit patients’ access to the sick role only to privilege some
other role (such as trial subject, activist, patient-subject, or patient-litigant). As this essay
shows, there is nothing certain in the doctor–patient relation as the legal and economic
bases for dispensing or triaging care and ethical rationales for withholding treatment
unleash their own kinds of hazards. At stake is how patients, the un-reflected-on collec-
tive in these settings, make sense of these conflicting values and enact therapeutic poten-
tial and a politics of recovery not only in clinical but also in juridical and experimental
settings.
The sick, perhaps like never before, are being confronted with the full cost of their
survival. At the same time, recovery has become much more idiosyncratic and unpredict-
able or much less guaranteed or calculable. In Brazil, for example, information about
right-to-health rulings for individual patients is not traveling up the state administrative
chain to effect systemic political change or create a sense of permanence of obligation.
The same cases can be litigated and relitigated so that rights never get bureaucratically
fixed. Recovery from disease, actual recovery—which involves continued access to proper
medicines and unbroken care or access to state health guarantees—entails new prob-
lems that are beyond biomedicine but that also pose challenges to its ethics, expertise,
and scope. Inês’s and Inacio’s “expertise” suggest ways that the sick must summon the
sick role within nonoptimal medical settings. The fine-grained social realities of patients
on whom the burden of recovery lies and their subjacent sociopolitical worlds beg for
analytic attention that would allow for such people-centered evidence to add up and mat-
ter publicly beyond the rhetoric of human rights or individual consumer choice.
If the mastery of the “social interaction of being sick” was staged largely within the
confines of an ideal doctor–patient relationship, today the fields in which patients enact
that social interaction in order to obtain care are far more complicated. It is striking that
although Inacio’s initial therapeutic agent from the interior did not have any medicines
for him—he did not even have a diagnosis—he did not lose sight of the cure: “He taught
me to live with the disease,” Inacio told me. Such a “cure,” however, was an impossibility
in the clinical-trial setting that gave him hope and even stopped the progression of his
renal failure. But because of the impermanence of obligation written into the trial’s very
N OT E S
This chapter appeared originally in Current Anthropology 54, no. S7 (October 2013): S67–S76.
www.jstor.org/stable/10.1086/670720.
1. See “Ezekiel Emanuel: Ethics of Healthcare” (YouTube video, 1:03:04, https://www
.youtube.com/watch?v=HKJY0riwlMo).
2. On the concept of pharmaceuticalization, see Biehl 2007a and 2007b. On the judicializa-
tion of the right to health, or the widespread adjudication of medicinal claims in courts, in
Brazil, see Biehl and Petryna 2013 and Biehl et al. 2012. On global clinical-trial settings as a
crossroads for the twin phenomena of pharmaceuticalization and judicialization, see Biehl and
Petryna 2013 and Petryna 2009. On the different roles patients take on, such as that of client,
see Whyte et al. 2013. For an analysis of pharmacists as key therapeutic agents and the conse-
quences for health, see Das and Das 2006, Ecks and Harper 2013, and Kamat and Nichter 1998.
3. For other theoretical and empirical explorations of clinical trials in broad contexts, see
Abadie 2010, Dumit 2012, Fisher 2009, Geissler and Molyneux 2011, Nguyen 2011, and
Sunder Rajan 2007, among others.
4. See Fassin 2011, Feldman and Ticktin 2010, Redfield 2013, and Samsky 2011, among
others.
5. Parsons understood this not as a dyadic doctor–patient relationship but as a triad that
also included the family.
6. For a critique of the volume-based mind-set, see J. Y. Kim and M. E. Porter, “Redefining
Global Health Care Delivery” (unpublished manuscript). On a discussion of the sick role and
its “death” in U.S. medicine, see Burnham 2012. Social scientists have poignantly moved
caregiving out of the neglected corners of biomedicine to show its true ambit. See Kleinman
2010, Livingston 2012, Mol 2008, Taylor 2008, and Han 2012, for example.
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lated by Stefanos Geroulanos and Daniela Ginsburg, edited by Paola Marrati and Todd
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Biehl and Adriana Petryna, 252–76. Princeton, NJ: Princeton University Press.
Sameena Mulla
“I just want to live.” I replay and listen to these words once more on my digital recorder.
The recorder captures the rasping textures of the wind and the husky sound of Rachel’s
voice as we sat at the end of a dock in a Baltimore suburb.1 On that warm, breeze-swept
afternoon, we discussed her future. Rachel was one of four local sexual assault victims I
had been interviewing about their experiences of making a formal report, undergoing a
medico-legal forensic intervention, and interacting with police officers and prosecutors
who were handling her case. I had first met Rachel in 2004, about a week following her
forensic examination; she saw a flyer about my research project and contacted me. We
had been meeting to talk, run errands, share meals, and spend time together every two
weeks. Over the past few months, Rachel had shared many details with me about her
uncle’s attack against her. Though like many other victims, she deliberated for a day or
two over making a formal report, the rape eventually drove Rachel to the police. In the
days that followed she had adopted a range of strategies to normalize her day-to-day life
while negotiating the impact of intrafamilial sexual assault on her evolving kin relations
(Mulla 2014a). With her birdlike frame, narrow shoulders, and skinny arms, Rachel
seemed to me to embody a youthful vulnerability. No doubt my perception of her fragil-
ity was enmeshed in my research interests and my knowledge that Rachel’s life had
recently been marred by violence.
The lake by which we sat was carefully man-made: regular in its shape, with a shore
of concrete that seemed more curb than coast. Between the docks, there were benches
spaced evenly at the water’s edge, though we always preferred to sit at the end of a
2 89
particular dock. Though heavily manicured, the setting was not without its charm and
comfort. This was a favorite spot for Rachel, and she frequently suggested that we drive
to the dock for our interviews. There, with water on three sides and the shore almost a
hundred feet away, we often sat to talk. This afternoon Rachel was telling me that she
had called the Office of the State’s Attorney and requested that they suspend the sexual
assault charges against her uncle. “Are you disappointed?” she had asked me after mak-
ing her announcement. When I shook my head and responded quietly, “Of course I am
not disappointed,” she told me she just wanted to live. “I just want to live. I just . . .
want . . . to live.” When I listen to the recording, I hear how the cadence of the second
utterance is slower and measured. At the time, it was also accompanied by Rachel’s ges-
turing, by hand and head, to the world around her. Her arm swept in the lake, the sun,
and the benches one at a time. Each sweep emphasized her words, almost as though she
was swearing by each of the elements toward which she gestured.
As our conversation took on the loping qualities of the afternoon, we discussed how
Rachel had come to the decision to make this request of the prosecutor handling her
case, as well as where and how Rachel wanted to spend her energies and attention in the
months ahead. As was my custom, I allowed Rachel to lead the conversation where it
would, and for the next forty minutes she returned again and again to the subject of
work. After the frenzy of the past few months, Rachel was ready to get to work. It had
been one month since she had found a job at a popular food chain. She was working long
hours at the store, and had recently opened a bank account in which she was beginning
to save a little bit of cash. “I love my work. I just love it,” she told me. These sentences
are also repeated periodically throughout the recording of our discussion. Each time, they
are uttered emphatically and with conviction. I asked her to elaborate: “What do you love
about your work?” “It’s just simple is all,” she answered. “I go in, and clean and do what-
ever, and run the register. And it’s like I’m good at it. I just love it. I wear a uniform. I
love it.”
I toggle back and forth between the separate instances of repetition: “I just want to
live.” “I just love work.” “I just love it.” “I just want to live.” I hear these utterances con-
tiguously, as one can with the handy manipulations of the digital recorder. I string these
utterances together like pearls on a string. They are tied together by the wind, by the
warmth and weight of Rachel’s voice, and by the energy she pours into her declarations.
I find myself considering not simply the repetition of her desire to live, her love for her
job, but her repeated inclusion of the modifier just. And though it is through my own
manipulation that I am able to reverse the order of words in her utterances, I begin to
wonder whether what Rachel is telling me is not that she wants to live simply and simply
to work. Rather, she is sharing with me what it means to her to live justly.
In my work with sexual assault victims, it is evident that from the very early moments
of making a formal report, justice is at stake. The justice that is at stake is not simply in
the formal institutional procedures that are initiated by making a report to the police, like
the medico-legal sexual assault forensic examination, the prosecutor’s decision to charge
2 90 • SAMEENA MULLA
(or not), and any formal case disposition through the progress of a legal trial. If anything,
the formal disposition of criminal trials in the criminal justice system is quite predicta-
ble, with police, forensic examiners, crime lab personnel, and prosecutors fairly well
apprised of high case attrition rates and the low likelihood of prosecution in any criminal
case, particularly in sexual assault felony cases (Frazier and Haney 1996; McMillan 2010;
Spohn and Tellis 2012). Among all of those who participate in the sexual assault interven-
tion, it is, perhaps, the victim who is least familiar with the most likely trajectory of the
formal process that her complaint has set in motion. As time passes and the possibility
of a trial and a formal resolution to the criminal justice process grows less likely and
more remote, victims’ talk frequently turns toward voicing a different notion of justice
than what the court of law might make possible.
As the days and months following the initial report grew, Rachel and the others I
worked with spoke less frequently about the formal legal proceedings while increasingly
seeking to work through and deepen their relationships to a more quotidian justice that
might permeate their daily lives. The kernels of desire for this type of justice, what I term
here “just living,” are found even in the early moments of reporting a crime and making
a formal complaint of having suffered sexual assault, even during the medico-legal sexual
assault examination.
What, then, is “just living”? What are the many layers of meaning that Rachel and the
other men and women with whom I worked describe, inflect, and deploy when they
invoke the term “just living”? One obvious component of just living that Rachel describes
with deep desire is a daily life in which she can live without the immediacy of violence.
To just live is to put aside, or from time to time delight in forgetting, or not remember-
ing, and even to carry on outside of the shadow of violence and its consequences. It is an
ideal, perhaps unattainable, of a life unconscripted by the harm of others. When Rachel
describes just wanting to live, she clearly indicates that she means to do so without hav-
ing to suffer her uncle’s attacks. She would often say that she did not want to talk to her
Uncle George any more. “I just don’t want to deal with him or that part of my family,”
Rachel would often say. Other victims I interviewed often expressed similar sentiments
toward individual perpetrators, wishes that the perpetrator was no longer a part of their
life, or that the threat of violence was somehow neutralized.
A moment free of worry or unconscripted by the harm of others may be a moment in
which the subject can shed the weight of structural and historical subjection; so argues
Didier Fassin in an article that engages the ethnographic significance of resentment and
ressentiment (2013). To take such worries seriously, anthropologists must recognize them
as an instantiation of the porous boundaries between moral, ethical, and political dilem-
mas. To make this move is to unite the reactive attitudes of the ethnographic subject with
a political framework. What are the reactive attitudes of sexual assault victims, and what
are the social and political contingencies marking such sentiments? The reactive attitude
of sexual assault victims in Baltimore is what I term the desire for just living, characterized
in part as a longing to forget, on occasion, the harm of others. In his response to Fassin’s
r: All right. My uncle—he just came home from jail the beginning of this year. This
is my first time meeting him. Well, my mom said I met him when I was younger
but I don’t ever remember meeting him. And my father wanted me to meet
him. It’s my father’s brother. And me and my cousin went to meet him one day.
And at first—
2 92 • SAMEENA MULLA
s: Where did you go to meet him?
r: At my father’s house. At first—we got along, well, we always got along pretty good
the couple times that I’ve seen him. And we had stopped talking because me and
my cousin Violet—that’s like my best friend—me and my cousin we was supposed
to meet him downtown. And he had us standing downtown for an hour and a half
in the rain and he never showed up. So, I stopped talking to him. And he used to
say little smart stuff to my cousin like, “Violet, you fat as I don’t know what. You
look good. You look just like your mother and somethin’ somethin’ somethin’.”
And one day I was sitting down there with him and I was like, “Uncle George, I
need a job.” He said, “Well, what kind of job you need?” I said, “Any job, a job is a
job it doesn’t matter.” He said, “What kind of stuff can you do?” I said, “I can type,
I can do office work, waitress, cashier, I can do anything.” He said “Well, do you
dance?” I said, “I can dance but I am shy around people so I am not just going to
come out and dance.” And he was like, “Well, you can be a stripper.” So I just
looked at him and he started laughing so I am sort of like, “Well, he is joking with
me,” so I started laughing and joking with him. So we went back and I told my
cousin about it and she called her mother and her mother was like, “You need to
stay away from him because that side of your family is nothing but pedophiles.”
Cause it’s a history of that going on my father’s side of the family. My Uncle
George has a daughter named Lia. Their younger brother [Rachel’s father’s and
George’s younger brother] got Lia pregnant. That’s his niece. So it’s been going on
for a while. We have a couple people that’s in that family that’s molested—a couple
men molested boys, young boys, and stuff like that. It’s crazy. And, well—
s: Did you know this before, or is this something that you found out afterward?
r: I found out that after I met him, but it was before this incident [of rape] happened.
Because I wasn’t going to sit there and say, “Oh well, y’all got a history of raping
people” ‘cause I never heard of my Uncle George doing anything like that. And
this my first time actually getting to know that side of the family. I really don’t deal
with my father like that. He hasn’t been in my life but I was trying to give him a
chance. And, I didn’t want to just say, “Oh well, I don’t want to be around y’all.” I
want to get to know them also. I know my mother’s side, why not get to know my
father’s?
In this short exchange, Rachel begins by explaining to me her estrangement from her
paternal kin, and how she recently made an effort to reconnect with her father and his
family. In her speech, this connection is often proxied through the trope of talk. It is
“talking to” that creates avenues for sustaining relationships. The more one talks, the
more one inhabits a world of shared language. The efforts to talk constitute a gesture of
forging family (Mulla 2011). The efforts to reconnect are not without complications. Each
gesture seems destined to be paired with a setback. Soon after seeking to meet her uncle,
Rachel and her cousin, Violet, were left waiting for him in the rain at an agreed-upon
downtown rendezvous. This reflection is followed by Rachel’s comment that she and
r: And one day I was sitting down there with him and I was like, “Uncle George, I
need a job.” He said, “Well what kind of job you need?” I said, “Any job, a job is a
job it doesn’t matter.” He said, “What kind of stuff can you do?” I said, “I can type, I can
do office work, waitress, cashier, I can do anything.” He said, “Well do you dance?” I
said, “I can dance but I am shy around people so I am not just going to come out
and dance.” And he was like, “Well, you can be a stripper.” So I just looked at him
and he started laughing so I am sort of like, “Well, he is joking with me,” so I
started laughing and joking with him. (Emphasis my own.)
As Rachel enumerates those jobs for which she feels she is qualified, ranging from
pink collar to service industry positions including typist, office worker, waitress, and
cashier, Uncle George twists her request into a perverse and boundary-violating flirtation
by asking her if she dances. In her account, she demonstrates a sense that she left a
verbal opening for him to follow this line of talk. She needs “any job . . . it doesn’t matter.”
Though she follows this utterance with a list of what type of work she thinks is suitable,
it is simply the process of talk that provides Uncle George with the opportunity to turn
the conversation. The turn the conversation takes is uncomfortable for Rachel. Rachel
initiated the conversation because she needs to find work; her need for work in this case
serves as the opening for Uncle George to recast Rachel from aspiring worker to potential
stripper. Seeking to reframe the lewd nature of his comments, Rachel engages him with
a gaze before coding the exchange as a joke and laughing off her discomfort.
2 94 • SAMEENA MULLA
It is the seeking of a reliable job and a desire to make a living that here form the very
basis of Rachel’s vulnerability. The difficulties of securing employment are complicated
not only by Rachel’s lack of credentials, but also by her own criminal record. Though her
sentence was reduced to probation, her criminal record presents an additional burden
when she is seeking gainful employment. Given the challenges she overcame to find a
job, Rachel’s satisfaction in her employed state is well warranted. Her satisfaction with
finding a position, even if at a fast food restaurant far outside of Baltimore’s city limits,
demonstrates the depth of her desire. The position required Rachel to uproot herself
from her family home in the city, to depend on friends (or anthropologists) with cars to
give her lifts when she did have business in the city, and to impose on the kindness of
yet another friend who lived out in the suburbs and could give her a place to rest her
head. Her new household was made up of only adult women and girl and boy children.
While she liked her living situation, staying with this friend and her friend’s mother,
what she liked most about her new household was its proximity to work. From the house,
she could simply walk to her job and walk home. The bank at which she had opened an
account was on the way. Rachel’s strategy for just living is tied to a newly established and
short circuit between work and home. In the suburbs, she is away from her family, her
younger brother, her infant half-brother, her stepfather, and her mother, to whom she
says she is deeply attached. She is also at a distance from her estranged paternal family,
including her uncle, who originated the violent act that most recently set her world on
its head. Even the evolving court case had presented an entanglement, requiring her to
modify her work schedule and find a ride, most often from me, from the suburbs to the
downtown location of the Office of the State’s Attorney. Choosing to withdraw her own
participation from the criminal justice proceedings allowed Rachel to maintain the closed
and predictable nature of her home-to-work circuit.
As I have stated earlier, victims’ impulses to return to work and secure a livelihood
are apparent even during the very early moments of sexual assault intervention. The
most common form this concern or desire takes is in the modest request for a note from
the nurse making an excuse for missed work. It was not uncommon for victims, even in
the throes of deeply felt emotion and heightened distress, to ask pointedly that they
receive a note or some official hospital documentation for their employers to show that
they were good workers who had not skipped work. Such a request was almost routinely
made during the weekdays, and even, at times, on the weekends. The careful manage-
ment of small administrative tasks, such as requesting proper documentation, indicates
that while one may be in the midst of a crisis, it is imperative to secure one’s future in
employment if one is to make a recovery. Alternately, one’s imagination of recovery is
tied to a future in work.
In addition to requests for administrative assistance for their efforts to return to work,
other victims narrated a set of events that located the risk of sexual violence in their work
(or the need to work) itself. One victim I attended was a despondent taxi cab dispatcher
who described how one of the drivers had taken advantage of the isolated and solitary
2 96 • SAMEENA MULLA
was no public transportation to speak of, so Leda depended on hacks to get to and from
work. Most of the time she made the commute without incident.
Like Laura’s, Leda’s experience of victimization is embedded in a life history of escap-
ing one type of sexual violence—in this case, that of an abusive husband—only to face
another. Her commitment to secure a living for herself and her children also constitutes
the risk she faces as she struggles to get to work every day. Leda’s victimization twice in
one month generated suspicion from the forensic nurses, who have a shadowy awareness
of women’s economic vulnerability but are quick to mischaracterize it within a framework
of criminality. Many of the nurses began suggesting that Leda was involved in transac-
tional sex, and that rather than being a victim of rape, she was simply a poor woman who
had bargained to exchange sex for a ride and had come to the emergency room when the
hack drivers, whom they cast as johns, became violent. This interpretation hinged on
ignoring Leda’s second trajectory to the emergency room, to which she had been admitted
for attempted suicide and not as a rape complainant. It was only when they learned that
she had attempted suicide following the second rape that the emergency room staff paged
the forensic nurse and asked Leda to make a formal complaint (Mulla 2008).
Like Leda, Tonya had been catching a cross-town hack in the city to return home from
her job (Mulla 2014b). Although city buses did run late into the night, they were very slow.
In addition, whereas north–south routes near the center of the city ran with regularity,
traveling east–west routes often involved depending on very intermittent routes and mul-
tiple transfers. Catching a hack was much more convenient, and would insure that Tonya
got home in time to relieve her babysitter. Usually, Tonya had the cell phone number of a
hack driver she used regularly, but since he was not responding to her this evening, she
was left with no other option than to flag down an unknown hack. The hack driver picked
up two additional passengers on his way to Tonya’s drop-off point. These two passengers—
like the driver, both male—convinced the driver to pull over in a parking lot and look the
other way as they dragged Tonya from the car. The driver left the scene. Tonya mentioned
that he was bribed: the other passengers cut a deal with him so that Tonya’s preexisting deal
with the driver was somehow arrogated. Here again, the complex economies of risk and
harm are aligned with gender such that a woman alone is denied her standing within the
contractual relationship between driver and passenger. Her contract is commandeered by
the sweeping power of the greater economic resources of the two male passengers, who
can offer the driver the drugs and cash that will compel him to look the other way. The
added dynamic of gendered alignments between male passengers and a male driver can
also be understood as compounding Tonya’s risk. The driver and the passengers do busi-
ness, and it is Tonya herself who becomes the commodity for which they trade.
When I layer the voices of Tonya, Laura, Leda, and Rachel into a multitextured concate-
nation, what contours of just living come into sight? Part of the descriptive work that these
women do is to produce a negative definition of justice, one narrated in their accounts of
injustice. The sexual aggression and exploitation by men—some who are strangers, others
family members, and still others coworkers—forms the backbone of the justice denied to
2 98 • SAMEENA MULLA
When she gestured to the elements surrounding us, seeming to swear by the lawn, the
evenly spaced trees and benches, and even the manmade lake, her desires for just living
bodied forth as the homogeneous predictability of the world we inhabited in this par-
ticular moment.4 That we could not see beneath the lake’s surface—or glimpse behind
the curtain, so to speak—to see how the grass, benches, and “coastline” were maintained
left us only a suburban topography upon which to project the sensibility and desire for
just living in the here and now. This present that Rachel had worked so hard to maintain
was fleeting and evasive. It could easily be relinquished or invaded, or simply evaporate,
but for the time being, its possibility was real. To live justly and to just live were always
already to be far from the willful desires of men, any men. “Just living” unfolded in a
world that required all critical guarantees to be honored, and the prison to be held in
abeyance. “Just living” was the pause of satisfaction with one’s small (but regular) pay-
check, the short walk to and from work, the sensation of pressing and slipping on a clean
uniform, the safety of resting one’s head in a houseful of women, and the direction of
one’s energies, if only for a while, into the labors of the self.
NOTES
REFERENCES
Black, Michele C., Kathleen C. Basile, Matthew J. Breiding, Sharon G. Smith, Mikel L. Walters,
Melissa T. Merrick, Jieru Chen, and Mark R. Stevens. 2011. National Intimate Partner and
Sexual Violence Survey: 2010 Summary Report. Atlanta: National Center for Injury Prevention
and Control, Centers for Disease Control and Prevention.
In recent years Haitians have struggled to live with a seemingly unceasing chain of
human-authored and natural disasters that have placed their nation’s most vulnerable
populations in states of ensekirite (Haitian Creole for “insecurity”). The trope of ensekirite
provides a metaphor for the lived experience of fear and anxiety provoked by quotidian
risks. The mid-1980s through the mid-1990s was a period that saw the rise of human
rights activism in protest of the Duvalier dictatorships (1957–86) and the election, exile,
and then restoration of President Jean-Bertrand Aristide, who many thought would usher
in an era of sustained peace and security. During this period of political turmoil, the term
ensekirite began to be used to describe cycles of political violence that was directed pri-
marily against the poor pro-democracy sector by reactionary military and paramilitary
forces. More recently the term has come to signify the uncertainties of living with crime,
multiple forms of violence, kidnappings, economic stagnation, environmental hazards,
and other social precarities.
During therapeutic work and ethnographic research I conducted between 1995 and
2000 among Haitians who were beneficiaries of a number of publicly and privately
funded victim advocacy programs, I learned that the ontological uncertainties wrought
by ensekirite were especially acute for those who were targets of organized violence. After
the years of terror—between the September 30, 1991, coup that ousted the nation’s first
democratically elected president and the October 15, 1994, restoration of democracy by
the U.S. and UN Multinational Force—international and national governmental and
nongovernmental actors worked to support the recovery and rehabilitation of both the
301
nation and its citizens. In this chapter I suggest that the complex challenges that faced
those who gave and received care during those years prefigure many of the struggles that
individuals and institutions have confronted following the January 12, 2010, earthquake.
During the 1990s (and now in unprecedented levels), humanitarian and development
interveners attempted to reduce social precarities and repair the psychosocial ruptures
that Haiti’s survivors experience between life and death, and between the living and the
dead.
International humanitarian actors intervened in the postcoup era to provide safety
and security to populations that had been persecuted during the nation’s protracted tran-
sition to democracy. A plethora of new governmental and nongovernmental psychosocial
treatment programs that the Haitian government was unable (and in many cases unwill-
ing) to provide were inaugurated for Haiti’s “victims.” In the context of these reconstruc-
tion and rehabilitation efforts, the psychiatric diagnostic category posttraumatic stress
disorder (PTSD) became an organizing trope influencing how many humanitarian and
development interventions in Haiti were conceived. As I have described elsewhere
(James 2010, 2011), a variety of individual and institutional interveners attempted to dis-
seminate an understanding of “trauma” as defined within the Diagnostic and Statistical
Manual of Mental Disorders (DSM) of the American Psychiatric Association and that con-
formed to the criteria of other Western nosological systems that categorize mental and
emotional distress. In their interactions with Haitian viktim—survivors of human rights
abuses who claimed victim status as a marker of their political identity—international
and Haitian mental-health-care providers, and women’s- and human rights organiza-
tional staff members (among others), vernacularized and disseminated the concept of
PTSD among their clients. The medico-legal framework through which these institu-
tional actors documented and classified the material and psychosocial effects of trau-
matic suffering offered a means of transforming experiences intended to dehumanize
and abase their targets into forms that could launch quests for justice and reparations.
Amid an unpredictable climate of ensekirite, the programs that these actors inaugu-
rated also created what I call purgatorial spaces:1 material spaces of security (or contain-
ment) outside everyday life or the normal social order in which caregivers introduce a set
of therapeutic or “penitential” practices in order to instill moral dispositions and practices
in recipients of care that can help relieve (and redeem) suffering. In Christian theology
the concept of purgatory has been used to describe a liminal space (or condition) into
which the souls of the dead who have failed to fully repent their sins are temporarily
assigned in order that they may undergo purification prior to salvation. External actors
may intercede on the soul’s behalf through prayer and other religious works. In temporal
therapeutic spaces, facilitators encourage the confession of suffering and the analysis of
traumatic experiences, and then prescribe practical modes of action to remedy pain and
sorrow that in many respects can be considered penitential. Through such secular acts of
discipline and penance, beneficiaries were “converted” from one social status to another
and encouraged to repair ruptured relationships between the living and the dead.
Members of the coup apparatus inflicted upon their targets a style of violence that can
only be described as necropolitical (Mbembe 2003). Through intimidation, detention,
torture, killings, and “disappearances” of those persons deemed enemies, and by forcing
their targets to engage in acts that violated moral norms (such as rape, gang rape, and
forced incest), the terror regime mobilized the power of death to subjugate the living. As
I discuss elsewhere (James 2008), these egregious acts ruptured bonds of kinship within
the family. Many of the Haitians targeted understood the individual to be at the nexus of
an extended social group that includes the living, the ancestors, and the lwa (divine spir-
its). The style of violence perpetrated inculcated in victims a status that resembles Orlando
Patterson’s (1982) description of “natal alienation” and “social death” among enslaved
populations. Alongside the destruction of material property (homes, movable goods, and
items like personal identification papers), necropolitical acts dehumanized individuals,
families, and whole neighborhoods during the coup years in Haiti. Violent campaigns
perpetrated against activists and their families reduced many of them to a life more “bare”
than the desperate conditions prompting their struggles for human rights, democracy,
and economic justice in the first place (Agamben 1998). In addition to the physical dam-
age inflicted upon the bodies of activists, their families, and the neighborhoods viewed
as pro-Aristide, the disappearance of loved ones, and in particular the absence of the
“corpus”—the material body of the living (or the presumed dead)—produced tremendous
fear, anxiety, grief, and guilt among a number of survivors. An inability to observe kinship
obligations to the living, and especially mortuary rites for the dead, was a cause of
tremendous affliction for viktim with whom humanitarians worked.
Some interventions aimed at ameliorating and redressing trauma inscribed or made
legible the ineffable but enduring marks on the “souls” (de Certeau 1984; Foucault 1979)
of individuals and families who were harmed through direct and indirect means by
agents of the state and other parastatal actors. When tethered to a legal understanding of
the violation of “human” rights, the concept of PTSD offered a secular moral discourse
that laid blame for ongoing psychosocial suffering at the hands of state actors rather than
in the survivors’ failure to observe norms of sociality and reciprocity in Haiti. In many
cases, such discourses and practices of trauma remoralized individuals whose victimiza-
tion had produced shame, isolation, avoidance of social interactions with others,
and pervasive feelings of guilt and embodied fear (Frank and Frank 1991; James 2010;
Kleinman 2006).
But the processes by which individual and collective histories of suffering and
ensekirite were rendered visible (and legible) also produced what I have characterized
previously as “political economies of trauma” (James 2004). Haitian psychiatrists with
whom I worked questioned whether the concept of posttraumatic stress was actually
required to identify and treat the symptoms of patients living with the complex sequelae
of egregious events: the categories of “depression” and “anxiety” were deemed sufficient.
The trauma narratives of some participants in the therapy groups did not solely convey
feelings of anger at perpetrators of violence, nostalgia for the past, or laments for the loss
of a public political identity as a militan; rather, viktim also expressed feelings of trepida-
tion, anguish, and remorse for failing to honor kinship obligations to family, whether
living or dead. As I have previously described (James 2008), the inability to perform
expected mortuary rites for the dead provoked profound feelings of guilt and sadness,
whether such losses occurred at the hands of human-authored or “natural” disasters.
Anthropologist Alfred Métraux ([1959] 1972, 243) has written that regardless of the reli-
gion that Haitians observe (Catholic, Protestant, Vodou, etc.), Vodou funeral ceremonies
are “always observed over every dead body.” Furthermore, Métraux asserts that “fear of
the dead is such that their close relations would never dare, under any pretext whatever,
to avoid those duties which custom exacts. Even the most destitute family does not hesi-
tate to sacrifice its last pennies to ensure a proper funeral for one of its members,” since
such rituals are linked to the soul’s fate in death (243–44).
During the coup years, the parents of Christian Dieusibon, a young man who lived in
the rural northwestern Artibonite department, were murdered. His father’s body was
never found. Christian became the sole breadwinner and protector of his siblings and
felt tremendous pressure in that role. But not only was it difficult to support the family,
he had not yet been able to hold a funeral to lay his father’s spirit to rest. The impact of
neglecting to perform such funerary rites could be profound: “The dead . . . have the
power of bringing down a ‘punishment’ on the head of a guilty relative. This can take the
form of illness or persistent bad luck” (Métraux [1959] 1972, 256).
After we listened to Christian share his feelings of grief at the loss of his parents,
angst from the new pressures of guardianship, and remorse over his failure to honor the
dead, Dr. Thomas and a psychiatrist from the Mars/Kline Psychiatric Center proposed
that he offer a “symbolic” funeral for his father to reorder the relationship between the
dead and the living (mete an plas moun ki mouri ak moun ki vivan). Once he had completed
the ceremonies, these caregivers suggested, both living and dead would be at rest (tèt yo
pli trankil). Dr. Thomas also said that even in the absence of the corpus, the observance
of expected mortuary rites would enable Christian to transform his own condition in life
and move forward. The intent of the ceremony would not be solely about honoring the
dead, but also about performing what can be viewed as a penitential act of restitution to
repair the relationships with the deceased and, in so doing, to transcend the binds of
“traditional” culture that seemingly contributed to his distress.
Christian next asked whether the Fund still offered the burial assistance it had once
provided to viktim during the coup years; unfortunately, this form of aid had since been
discontinued. In the weeks following this meeting, however, he procured funding and
material resources from members of the community in which he lived to offer mortuary
rites for his father. (It was not clear whether such rituals were conducted with an effigy of
ODETTE JEAN
The January 12, 2010, earthquake killed more than two hundred thousand people, many
of whom were buried in mass graves without customary mortuary rites for each indi-
vidual soul. Nearly five thousand inmates escaped from prison facilities and remain at
large (Pankhurst 2012). Some of these escapees have resumed careers as agents of the
terror apparatus and have exacerbated ensekirite through violence, crime, rape, and
intimidation of those inside and outside camps for internally displaced persons. While
the nation continues the process of rebuilding infrastructure and lives devastated by the
disaster, Haiti also grapples with a devastating cholera epidemic and the spread of other
infectious diseases. It is imperative that international interveners, and their counterparts
at the national and local levels in Haiti, continue working toward creating opportunities
that enable the nation’s poorest citizens to meet their “basic needs” while also living amid
secure social spaces.
Numerous international organizations have also created programs to treat postearth-
quake “PTSD” (alongside other mental health conditions). These programs resemble, but
are not identical to, interventions that were implemented during and after the 1991–94
coup years. The trauma treatment programs I observed and in which I participated in the
1. See also Cohen 1999, Garcia 2010, and Rabinow 1999 for additional applications of the
concept of purgatory in social theory.
2. Both of these latter groups were begun late in 1998 and dwindled in attendance in early
1999 because a new cycle of heightened ensekirite commenced after President René Préval’s
January 11, 1999, dissolution of parliament and decision to rule by decree.
3. See Richard C. Keller, Colonial Madness: Psychiatry in French North Africa (Chicago: Univer-
sity of Chicago Press, 2008) for a compelling analysis of the emergence of ethnopsychiatry as a
discipline. See also Didier Fassin’s critique of contemporary ethnopsychiatry in his dialogue with
one of its leaders, Tobie Nathan, in Genèses 35 (June 1999): 146–71; and 38 (March 2000): 136–59.
4. See the Israeli Center for the Treatment of Psychotrauma website (accessed February
28, 2012, www.traumaweb.org/content.asp?pageid = 434).
5. According to the Trauma Research Institute’s website (http://traumaresourceinstitute
.com/trauma-resiliency-model-trm/, last accessed February 28, 2012), “Trauma Resiliency
Model (TRM) Training is a program designed to teach skills to clinicians working with children
and adults with traumatic stress reactions. TRM is a mind–body approach and focuses on the
biological basis of trauma and the automatic, defensive ways that the human body responds
when faced with perceived threats to self and others, including the responses of ‘tend and
befriend,’ fight, flight and freeze. TRM explores the concept of resiliency and how to restore
balance to the body and the mind after traumatic experiences. When the focus is on normal
biological responses to extraordinary events, there is a paradigm shift from symptoms being
described as biological rather than as pathological or as mental weakness. As traumatic stress
symptoms are normalized, feelings of shame and self-blame are reduced or eliminated. Symp-
toms are viewed as the body’s attempt to re-establish balance to the nervous system.”
6. See Trauma Resource Institute, “Trauma Resiliency Model (TRM),” accessed February
15, 2015, http://traumaresourceinstitute.com/trauma-resiliency-model-trm/.
7. See Trauma Resource Institute, “History,” accessed February 15, 2015, http://
traumaresourceinstitute.com/history/.
REFERENCES
Agamben, Giorgio. 1998. Homo Sacer: Sovereign Power and Bare Life. Translated by Daniel
Heller-Roazen. Stanford: Stanford University Press.
An-Na’im, Abdullah Ahmed. 1992. Human Rights in Cross-Cultural Perspectives: A Quest for
Consensus. Philadelphia: University of Pennsylvania Press.
Atcheson, Jessica L. “Healing Trauma after Disaster.” Rights Now, Winter 2014. Accessed
February 15, 2015. http://www.uusc.org/updates/starting-to-live-again.
Brodwin, Paul. 1996. Medicine and Morality in Haiti: The Contest for Healing Power. Cambridge:
Cambridge University Press.
Cohen, Lawrence. 1999. “Where It Hurts: Indian Material for and Ethics of Organ Transplan-
tation.” Daedalus 128 (4): 135–65.
de Certeau, Michel. 1984. The Practice of Everyday Life. Translated by Steven Rendall. Berkeley:
University of California Press.
Angela Garcia
For Bernadette
In this chapter, I reflect on the way death, as involving loss, is realized within kin relations
as a resource for life. Specifically, I explore how death manifests itself in affects and
practices that may lessen the injury of loss and strengthen the commitment to live in
contexts of uncertainty and pain. My goal is to show how death-in-life is not a morbid
manifestation that is somehow opposed to life, but rather a vital experience that provides
a basis for life’s meaningful unfolding, even generating hope for a future. However, as
this future is expressed through loss, doubt is also cast upon any possibility of its coming
to pass. I focus on this tension and try to capture the sense in which it shapes the efforts
of kin to protect and care for one another—to hold on to the possibility of life—but with
the knowledge that there is no assurance that their efforts will succeed.
For me these are not issues concerning the moral or psychological foundations of certain
behaviors. Rather, I am concerned with understanding the existential situations of people as
they struggle to live in a world in which loss is deeply rooted in the rhythms of history and
the everyday. There is an enormous literature on death and the experience of loss. My own
thinking about these matters is influenced by theories of melancholy that point to sources
beyond individual consciousness and that develop melancholy’s potential for understanding
personal loss within the context of a larger history already laden with it.1 The experience of
loss is thus encumbered with a variety of implications, meanings, and temporalities. I seek
to unfold and disclose loss as a way of inhabiting the world and as a condition connecting
past and future. I do so not in the pursuit of healing or happiness, but to renegotiate the very
terms of life and living in a world so often characterized as destructive and deadly.
3 16
My concern with these issues derives from my engagement with multigenerational
households struggling with heroin addiction in northern New Mexico’s Española Valley,
which has suffered the highest rate of heroin addiction and heroin-induced death in the
United States. Between 1995 and 2000, this network of rural communities saw over one
hundred deaths attributed to heroin overdose. My family has roots in the Española Valley,
and I lived there as a child. Several of my schoolmates died from an overdose of heroin.
In 2003, I returned to the Valley as a doctoral student and lived there for three consecu-
tive years, studying families contending with heroin addiction. I return to the Valley at
least twice a year. Twelve of my interlocutors died from heroin overdose during that time.
They were my neighbors and friends, people I longed to see and sometimes tried to
avoid. I miss them all.
Heroin addiction in the Española Valley primarily affects the Hispano population,
which traces its ancestry back to the Spanish colonialists. Among Hispanos, addiction is
commonly shared across multiple generations of kin, who often live in a single shared
household. This living arrangement reflects Hispano traditions and ideals of family as
cohesive, self-reliant, and enduring. It also reflects—and, to a degree, offsets—conditions
of poverty, which include high rates of unemployment, chronic health problems, and lack
of health insurance, among other conditions.2 The multigenerational heroin-using house-
hold is a site of illness and care, death and survival.
It is worth dwelling for a moment on this tension. The Española Valley was settled by
Spanish families beginning in the seventeenth century through a system of land grants,
which remained in the family lineage for generations. These land grants enabled kin to
live in close geographic proximity and to work collectively, thereby creating and sustain-
ing crucial affective, material, and social bonds.3 Elsewhere I have written in detail about
the successive cycles of colonial conquest and dispossession, especially through the
establishment of the U.S. Forest Service and the sudden imposition of the Los Alamos
National Laboratories, both of which violently disrupted these connections (Garcia 2010).
Let me summarize here by noting that the vast majority of Hispano land grants are no
longer in the possession of their “heirs.” Today, most Hispanos are forced to commute
long distances to work low-wage service-sector jobs. Whatever inherited land remains is
increasingly sold to survive, creating tensions and resentments within many families.4
The land, ever present but out of reach, produces an idiom of loss and longing that
expresses both the cohesiveness and fissures of family life. It is a witness to another time
and to the death of a way of life.
To a certain extent, today’s multigenerational household is a form of connection that
seems to have survived the collapse of this life, since it enables kin to continue to live
together and to contribute to the care of the household and each other. This living
arrangement has become enmeshed in material and emotional pressures from property
loss, incarceration, addiction, and institutional neglect. As a result, these households
carry an overwhelming responsibility for the care of their family members. The heroin-
addicted household has been torn open by the cumulative losses of the past, but it also
3 18 • ANGELA GARCIA
possibilities for life enabled by death, and to apprehend how loss is one basis for claiming
a future.
F I R S T M O M E N T: A W I N T E R N I G H T
I begin with a memory. The memory is Bernadette’s, whom I met in 2004 shortly after
I began conducting fieldwork.6 Like so many of her memories, this one takes place in the
village where she spent most of her childhood, the only child of a single mother named
Eugenia. The house where Bernadette grew up figures prominently here; it is also the
house Eugenia was born in and where her mother (Bernadette’s grandmother) died.
Eugenia sold the home over twenty years ago. I’ve visited it many times, sometimes with
Bernadette and sometimes alone, but always from the outside. It is an earth-colored adobe
with a pitched tin roof and is framed by old fruit trees. It looks grand in comparison to
the neighboring residences, all of which are narrow trailer homes that sit very close to
the road. Bernadette was living in a rented trailer home the day she recalled this memory.
But she spoke of the old adobe in the present possessive, as if it still belonged to her
family, as it had for many generations.
It was summer, too hot for us to sit outside. From the tidy but dark living room of her
trailer Bernadette recalled being ten years old. Christmas had just passed without much
celebration because her mother was too ill to participate in the usual holiday festivities.
She recalled that the house was cold and there was little to eat or do. Her days were spent
trying to keep a fire going in the old wood stove and checking on her mother, who mostly
stayed in her bedroom beneath heavy wool blankets. Eugenia was drying out—detoxing.
Bernadette never said what she was detoxing from, perhaps because she never used the
word heroin, preferring (as many Hispanos do) the term medicina, emphasizing the
drug’s capacity to heal, not hurt. However, in this context, it wouldn’t make sense to say
Eugenia was detoxing from medicina, just that she was drying out.
On one of these winter afternoons, Bernadette left her mother home alone to visit family
who lived in a nearby village. Many relatives had gathered there, bringing with them leftover
foods from earlier celebrations and small gifts to exchange. For a few hours, Bernadette’s
mood brightened. But the pleasant and relaxing atmosphere was interrupted when she
overheard some of her relatives whisper angry words about Eugenia. They criticized her for
being addicted to heroin, for being a “bad mother,” and for not taking care of the ancestral
home, which she (and not her brothers) had inherited. Bernadette recalled feeling angry and
shamed. She asked her uncle Ray (Eugenia’s brother) to drive her back home.
Later that evening, one of Bernadette’s cousins came by unannounced and asked her
to join him for a walk. Although it was dark and bitterly cold, Bernadette agreed. She
imagined that he wanted to see if she wanted to talk, given that he was at the gathering
and saw her leave upset.
The cousins were close in age and size. They walked up the narrow, snow-covered
road that snaked through the village. Bernadette recalled that it was a quiet night and that
I N T E R L U D E : I N J U RY A N D C A R E
When I met Bernadette in 2004, she had just been charged with a felony-level offense.
Prior to her trial, she was ordered to the rural drug-recovery program where I worked as
an ethnographer and on the clinical staff. I observed Bernadette’s monthlong stay during
my work on the night shift and often attended to her basic needs, like providing food or
medications or dialing the telephone for her outgoing calls. We got along easily.
Having been a patient at the clinic before, Bernadette was used to the routine of rehab
and avoided conflict with the other patients and staff. Without my ever asking, she would
wash the evening dishes, sweep the floors, or help straighten the common room. If I
protested, she insisted. She never joined the other patients in watching television, saying
that she preferred to stay busy by cleaning or writing in her daily journal, which patients
were encouraged to keep. It was during casual conversations that I first learned that her
mother, Eugenia, was also addicted to heroin and suffered from lifelong, debilitating
depression. I also learned that Bernadette had two children: an estranged teenage son
and a young daughter named Ashley who had lived with her until her arrest.
On the day of Bernadette’s departure from the clinic, an electronic monitoring brace-
let was attached to her ankle. She was confined to her trailer until her impending trial
date. Her only legal time away from home was to meet with her probation officer or to
attend 12-step meetings. Still, she would steal a few moments between these meetings
to visit Ashley, who had been placed under the care of a relative after her arrest, or to see
her mother, whose trailer was located only a few miles away from her own. Mostly, how-
ever, Bernadette spent her days at home alone.
I visited Bernadette often during this period, making the short drive from my village
to hers. I brought her groceries and cigarettes, and she told me stories about her life.
Often these stories centered on “another time,” well before she started using heroin,
when she and Eugenia lived in their ancestral village, in their ancestral home. Bernadette
spoke lovingly about the home and the events that took place within it—birthday parties,
Christmases, picking fruit from the apple and apricot trees from surrounding acres.
Sometimes she showed me photos that corroborated her memories. But the bucolic
image of the house and the quaint memories of it stood in tension with the other stories
When I was a teenager, that’s when I really knew there was something going on with my
mom with drugs. She’d be crying all the time and sick with las malias [literally, “maladies”;
pain associated with heroin withdrawal]. She didn’t go to work and I started staying home
from school, you know, to watch her, make sure nothing worse happened. She’d cry for her
medicina. . . . I wanted her to feel better. That’s all that mattered to me. I was afraid she was
going to die. I was afraid, and the only thing I could do is help her get high.
During this period of Bernadette’s youth, the first epidemiological studies of heroin
addiction in the Española Valley were under way, coinciding with the escalation of the
nation’s War on Drugs. In New Mexico, arrests for nonviolent drug offenses skyrocketed.
An outcome of these processes was the establishment of the first privately run women’s
prison in the United States, located in a remote corner of northwestern New Mexico;
Bernadette was eventually incarcerated there.
Returning briefly to Bernadette’s youth, what I wish to emphasize is that the institu-
tions concerned with the governance of illness, gender, and social life shaped, in part, the
way Bernadette cared for her mother—and the way she would eventually be cared for by
her. That is, the institutional arrangements for the treatment of addiction were projected
into the small routines of intimacy Bernadette and Eugenia developed. Such routines can
never be reduced to being merely an outcome of governance; thus, I have found Eliza-
beth Povinelli’s (2006) concept of the “intimate event” helpful in thinking about how
such routines are produced at the intersection of individual agency and social constraint.7
In the context of pervasive sexism, the criminalization of addiction, and the lack of alter-
native health resources, heroin is medicine. The labor of “scoring” is a means of caring.
Bernadette often said that “once Eugenia got her fix, life would go back to normal,”
meaning Eugenia would stop hurting and would be released into feelings of love and con-
nectedness—feelings Bernadette also craved and needed. As an intimate event, we might
understand such scenes as both Bernadette’s individual demonstration of her love and
care for her mother and a manifestation of the inflexible constraints (legal, therapeutic,
S E C O N D M O M E N T: A F I G U R E O F I S O L AT I O N
I visited Bernadette in prison and spoke to her often by phone. During our visits, we sat
together in the brightly lit visiting room. Although these visits were designated “open
contact,” meaning prisoners were not separated by a screen or intercom system, touch
was prohibited. Bernadette was untouchable, a figure of isolation.
Our first visit took place a few months into her sentence and lasted several hours.
Given the circumstances, I found her to be in relatively good spirits. Bernadette said that
she missed Ashley but was certain that Eugenia “couldn’t survive” prison, thus implying
that she would survive. Confounded and perhaps chastened by her sacrifice, I challenged
her: was it possible that she was overestimating Eugenia’s vulnerability and taking too
lightly her own? Bernadette was resolute. “At night there are so many noises,” she said.
“You can hear all these ladies crying.” Bernadette suggested that the emotional outpouring
of the other inmates would generate an overwhelming feeling of despair in Eugenia,
threatening her chances of survival.
Didier Fassin suggests that the concept of survival “shifts lines that are too often
hardened between biological and political lives: it opens an ethical space for reflection
and action” (2010, 93). Fassin cautions against reductionist understandings of survival
for those living under oppressive circumstances, emphasizing the complexity and poten-
tiality of subtle gestures and affects produced within the context of oppression. Similarly,
I have come to understand Bernadette’s insistence that she could survive what Eugenia
could not as far more nuanced than a calculation of their respective capacities to with-
stand hardship; it was an expression of her care for her mother, as well as an affirmation
of her own strength.
That Bernadette drew upon the sounds of women crying at night to evoke her moth-
er’s vulnerability struck me. I recalled our earlier conversations about her mother’s
depression, especially her childhood memories of Eugenia’s long bouts of crying, which
inspired contradictory feelings of helplessness and protectiveness in her. As it turned
The path of caring for Eugenia led Bernadette to suffer a profound loss. But it was a loss
that also expressed her hope for life. I came to understand this in 2009, shortly after
Bernadette was released on parole. Back in the Española Valley, she was living with her
mother and daughter again. Their housing situation was unstable: Bernadette was find-
ing it difficult to find a job, and Eugenia’s monthly SSI check barely covered the rent for
the apartment. During a visit, I found her new residence to be worryingly vacant. The
white bed frame was gone. The apartment seemed to embody a duality of holding onto
and losing what is most dear. Still, Bernadette was happy to be home and spoke of plans
to fix up the apartment once their financial situation improved.
Frankly, my visit that day was intended in part to suggest other living arrangements for
Bernadette and Ashley. I was worried that living with Eugenia would increase Bernadette’s
NOTES
1. Melancholy speaks to the fundamental fact of loss and positions it as a potential site of
a relation to, rather than a remove from, the world. As a paradigm for the enduring attachment
to objects of loss, it opens anew questions of the relationship between past and present, death
and survival. See Benjamin 1977, Eng and Kazanjian 2002, and Freud 1989.
2. New Mexico has the highest national rate of residents living in poverty and the second-
highest percentage of those living without health insurance. One-fourth of the residents of
Rio Arriba County, where the Española Valley is located, live below the poverty level.
3. Hispano land assumed a lexical structure of kinship as represented in the idiom la tierra
es madre (“land is mother”), and agricultural terms were imbued with connotations of kinship,
such as acequia madre (“mother ditch”) and sangrías (literally “bloods,” or smaller ditches).
Such naming practices yield insight into the interconnectedness of kinship and land and, by
extension, the proximity of loss.
4. Between 2002 and 2007, Hispano land holdings declined by nearly four million acres,
reflecting the stark economic pressures Hispanos face. Many landless heirs poignantly con-
sider themselves as “hijos de nada” (“heirs of nothing”).
5. I refer here to both the biologizing of addiction—especially the dominance of neurobio-
logical knowledge that takes up addiction as a chronic dysfunction of normal brain systems—
and the criminalization of addiction.
6. I do not have an audio recording of Bernadette’s recollection of this memory, so I present
it here in assimilated form. Thus, Bernadette’s memory might also be framed as my memory.
I prefer to consider myself as having been touched by this memory, and marginally connected
to it, through my rendering of it here.
7. Drawing attention to specific practices of indigenous and gay communities, Povinelli
argues that both are caught, albeit differently, within the liberal colonial regimes, which “con-
stitute a subjectivity and sociality that not only absorbs the poison of a vicious pervasive racism
and homophobia . . . but also produce from these repressive social fields a viable antidote to
them” (2006, 100).
REFERENCES
Benjamin, Walter. 1977. The Origin of German Tragic Drama. Translated by John Osborne.
New York: Verso.
Berlant, Laurent. 2006. “Cruel Optimism.” Differences 17 (3): 20–36.
Das, Veena. 2010. “Engaging the Life of the Other: Love and Everyday Life.” In Ordinary Eth-
ics: Anthropology, Language and Action, edited by Michael Lambek, 376–99. New York:
Fordham University Press.
Eng, David, and David Kazanjian. 2002. Loss: The Politics of Mourning. Berkeley: University of
California Press.
Fassin, Didier. 2010. “Ethics of Survival: A Democratic Approach to the Politics of Life.”
Humanity: An International Journal of Human Rights, Humanitarianism, and Development
1 (1): 81–95.
Foucault, Michel. 1990. The History of Sexuality. Vol. 2, The Use of Pleasure. Translated by
Robert Hurley. New York: Vintage Books.
Freud, Sigmund. 1989. “Mourning and Melancholia.” In The Freud Reader, edited by Peter
Gay, 584–85. New York: W. W. Norton.
Garcia, Angela. 2010. The Pastoral Clinic: Addiction and Dispossession along the Rio Grande.
Berkeley: University of California Press.
McLane, Janice. 1996. “The Voice on the Skin: Self-Mutilation and Merleau-Ponty’s Theory
of Language.” Hypatia 11 (4): 107–18.
Merleau-Ponty, Maurice. 1995. Phenomenology of Perception. Translated by Colin Smith. New
York: Routledge.
Povinelli, Elizabeth A. 2006. The Empire of Love: Toward a Theory of Intimacy, Genealogy, and
Carnality. Durham, NC: Duke University Press.
HEALING
Religious and Secular Bodies
. . .
The section on healing is not about the cure of illnesses seen as discrete or bounded
entities, but rather about the way individual lives and the social milieu constitute each
other at moments when life is undone by events large and small and is reconstituted or
remade sometimes in simultaneity and sometimes in succession. We do not wish to
present a beatific image of healing but to suggest, instead, that our pictures of healing
are also pictures of how pain is distributed in the social body, of futures that have to be
made in the face of routine as well as catastrophic suffering, and of learning to endure.
We might ask, Who are the people who take up the burden of attending to a torn and
disrupted world? Healing, like care, has its light side and its dark side; we need to under-
stand both sides to see how the social and the natural are made to hold together.
The seven chapters in this section do not take “healing” as their direct subject of
inquiry; one could as well think of them as being about secularism, or about the body or
about precarious lives—which, indeed, they are. Read together, they show the social
forms through which alone the complex of ideas and experiences of healing can be made
to appear, but they also show the waxing and waning of the impulses to find life or for-
sake it. The particular contribution of these chapters is to show not only the social condi-
tions in which institutional experiments happen but also the existential stakes in the
impulse to address pain; to catch the moment of joy, however ephemeral, that humans
find in each other; and also to reimagine one’s future by learning to endure the idea of
one’s own death in relation to the death of the other.
In the chapter on the secular body that opens this section (chapter 18), Talal Asad asks,
What are the distinctive ways of living and working through suffering? His masterly
exposition into the historically shifting grammar through which the healthy body and
the sick body are defined cautions us that before we attend to the question of healing
there is the prior question of who or what is in need of cure. Is the purpose of healing to
find ways of getting rid of pain, or is it to learn the deeper significance of pain? How are
the secular body and the religious body connected, and is pain the major medium
through which the psychic structure of the political body is articulated? Thus the theo-
logical notion of disease as a secret disobedience to God is continuous in some ways
with the secular notion of the obligation to maintain the body in health as an obligation
to the biopolitical State. Similarly, the secularized view of the body is never as disen-
chanted as hard secularists are prone to believe. This mutual intertwining of the reli-
gious and the secular sets up a very important framework for understanding what Witt-
genstein would call grammar (see the discussion in the introduction), through which we
learn what kind of object is disease or pain or what it means to be in living relationship
to these entities.
HEALING • 331
In the next chapter, entitled “Nonself Help” (chapter 19), A. David Napier examines the
debates in immunology and the shift from the earlier, reactive definition of immunology to
that of protection through expulsion. What is so often overlooked throughout these debates
over models of immunity, says Napier, is the degree to which immunological identity
hinges on culture-bound notions of a wholly autonomous “self” that persists over time and
protects its integrity through the expulsion of the other. Yet for some conditions such as
pregnancy, the relation between a pregnant woman and the fetus is not that of expulsion
but of temporary respite in the fight against the “foreign presence” in the body that allows
reproduction to happen. Through a fascinating exploration of such objects as viruses that
stand between life and nonlife, Napier is able to show how healing might be redefined as
explorations on the borders of life. We harbor within ourselves the desire to court risk: our
bodies not only fight viruses, they also nourish them. The new ways of conceptualizing
immunity lead one to reimage the relation between life and death as having far greater
intimacy than the notion of life as fundamentally opposed to death. Of course, the insight
that the impulse to life and regeneration is integral to the way societies deal with death is
not new (see Bloch and Parry 1982), but whereas earlier studies privileged symbolic or
ritual constructions, Napier makes the case that our bodies nourish death as much as they
nourish life as an ontological claim. This shift opens up a whole plethora of questions
regarding individual variability and the relation between human and nonhuman that
should engage anthropologists of medicine as much as scholars of religion.
The subject of Christopher Dole’s chapter, “Secular Histories, Saintly Returns” (chap-
ter 20), is the poetic speech and saintly biography of the Turkish healer Zöhre Ana,
which stands in an ironic relation to the secular reforms in Turkey in which such forms
of healing were made illegitimate as characteristic of “superstition.” The irony lay in the
fact that Zöhre Ana was, for her followers, the inheritor of Atatürk’s spirit (ruh) and a
person through whom Atatürk, as a deceased evliya, was able to speak again to the living.
Yet this is the same Atatürk, the modernist founder of Turkey as a nation-state, who had
pronounced such forms of healing that appealed to the spirits of the dead as a disgrace
to civilization. Of course people go to healers because they want cure or solace in the face
of suffering, not because they are engaged in a deliberative discourse over secularism.
But in the light of the continuing confrontations between the authority of the State to
redefine Islam in modernist terms and the authority ascribed to a variety of spiritual
healers, Dole finds that when people recounted their experiences of healing, the story of
personal and familial loss was knotted into struggles over the status of death, loss, and
devotion in relation to State power. Since a large variety of people sought the assistance
of healers outside the State’s authorized network of clinics and medical practitioners
such as Qur’anic healers, living saints, and other religious figures, the therapeutic was
shot through with the political in their accounts. Thus when Zöhre Ana speaks in the
voice of Atatürk, the founder of the secularist critique that supported the suppression of
her forms of religious authority, ironically he is the one who returns in the manner of
unbidden thoughts to authorize her status as an evliya. Just as death was expelled to the
332 • HEALING
margins of the nation-state under secular reforms that defined life as the biological life
of the population but returned to the center when people tried to find spaces of healing
within which they could express aspirations for a life beyond biological life, so the saintly
forms of healing that were expelled from the nation returned in the illicit but revered
healing practices of saints such as Zöhre Ana. The great twist in the plot is that this is
accomplished not by a mode of resistance to secular authority but by making the secular
authority itself the agent of this return. As Dole says, such forms of healing might have
been expelled from the nation-state, but they cannot be expelled from history.
The next two chapters—that by Bernadette Wegenstein, entitled “The Good and the
Bad Breast” (chapter 21), relating to the themes of cosmetic surgery and breast cancer; and
that by Zoë H. Wool, entitled “Attachments of Life” (chapter 22), which looks at modes of
rehabilitation of injured soldiers at the Walter Reed Army Medical Center in Washington,
D.C.—bring issues of gender to the center of analysis. Addressing herself to what she calls
“beauty’s dark side,” where beauty and death coincide, Wegenstein looks at the increasing
demand for breast augmentation through cosmetic surgery that goes along with single or
double mastectomy in U.S. hospitals. Working with twelve breast cancer patients in a
hospital in Baltimore as part of a documentary project, Wegenstein takes us through the
biographies in which the hope for surgical improvement on one’s body stays in the vicin-
ity of the fear of death that women live with after they have been diagnosed with cancer
or are informed of a genetic risk for developing cancer. While Wegenstein clearly recog-
nizes that certain cultural hegemonic discourses such as an internalized racism and the
impact of advertisements on the idealized female body are present in the way the desire
for self-improvement comes to focus on the breast, she insists that no single principle can
explain the valence of the idea that the suffering caused by breast cancer can be redeemed
by making a new breast appear and cover up the place in which the ugly cancer revealed
itself. Wegenstein finds a deep grammar in which ideas about the good breast and the bad
breast as well as Christian notions of martyrdom as applied to female saints appear as
fragments in the stories of the twelve women she followed. Deeply held notions—of
beauty as masquerade, of skin-deep beauty as hiding the ugliness of the decaying body,
of the presence of death that mocks beauty as well as the possibility that the appearance
of breast cancer is also a chance of being born to a new life—are given expression in the
narratives of the twelve women, showing the closeness of birth and death in the career of
the disease. Canguilhem’s astute notions of the pathologically normal and diseases as an
experiment with life are displayed with great finesse in this chapter.
Zoë H. Wool’s account of the practices of rehabilitation of soldiers injured in the wars
in Afghanistan and Iraq raises the fundamental question of what the soldiers are being
rehabilitated to or as. The site where Wool conducted her fieldwork, Walter Reed Army
Medical Center, is the flagship medical institution where the promise of attending to
combat injured soldiers has been publicly displayed since World War I. The rehabilita-
tion of combat-injured soldiers into socially productive men who would contribute to the
regeneration of national life involves the dual task of making these men fit into their
HEALING • 333
altered bodies and helping them to reengage life as husbands and fathers as well as pro-
ductive citizens of the State. It is fascinating to see how the conjugal relation is seen as
the key to their rehabilitation: Wool interprets this in terms of the place of carnality
within the imagination of sociality under neoliberalism. The irony, of course, is that such
notions of carnality, sexuality, and gender not only define the market place but are incor-
porated within the State programs of rehabilitation. The emphasis on restoring the mas-
culinity of the injured soldiers and their own anxiety around their masculinity are evident
in the cases of, and interviews with, the injured soldiers and their nonmedical caregivers.
Wool’s analysis raises the important question of what rehabilitation for female soldiers
might mean within this scenario, in which the return to civil society is so strongly knot-
ted with the idea of remaking men as husbands and fathers. Though Wool sees her
problematic primarily in terms of a critique of the social underpinnings of ideas about
masculinity, we could ask if the place of carnality under neoliberalism that she speaks
of is a problem of “opinions” and “ideologies” alone, or if, for the individuals who are
injured, the ideas of masculinity become so embedded in their bodies that healing might
be hard for them to imagine in other ways. The issues of existence and identity cannot
be so easily disentangled, which is obviously not to say that other ways of imagining
masculinity are not available theoretically—just that within the forms of life that grew
the modes of participation in war, perhaps modes of healing, too, grew as part of that very
life. When can we say that a language game is complete? asked Wittgenstein, pointing
us to the fact that we must leave open the idea that new experiences will come to be coded
in the natural and the social to grow our forms of life. But we cannot determine before-
hand how such streets and suburbs in the cities of words and of life will grow.
Aslihan Sanal, in her chapter, “Key Acts” (chapter 23), tells a fascinating story of the
intertwining of religious and secular notions in the strategies for encouraging cadaver
donations in Turkey’s organ transplant programs. Sanal’s major claim is that behind the
surface symbol of “organ donation” lies the dominant (what Victor Turner might have
called “root”) symbol of sacrifice that is indicated not only in semantic echoing but also
at the level of affects mobilized by the two forms of action. She shows how the stigmatiz-
ing and religiously condemned action of suicide in women is turned into the redemptive
event of nourishing another person through the act of cadaver donation. There is a very
interesting analysis of how the publicity around the event of suicide and donation of
organs becomes the occasion for another kind of publicity by the transplant community
of encouraging people to consider cadaver donation. The mobilization of the symbol of
sacrifice helps to overcome the taboo against what might have been seen as the mutila-
tion of the body—for the body must be returned whole to God, to whom it rightfully
belongs. Here, too, the secular body and the religious body become aspects of the same
body in death, in which the end of biological life is seen to regenerate the lives of others
much as the animal killed in sacrifice generates life.
Nancy Rose Hunt’s chapter, “Life, Death, and Reverie” (chapter 24), asks what is to be
gained by a methodological shift away from the temporal logic of the event-aftermath
334 • HEALING
that forefronts the atrocious violence in the Equateur region of King Leopold’s Congo
Free State in the 1890s and 1900s and its aftermath in terms of the inability of women
to give birth due to either high rates of infertility or miscarriages, toward a “vernacular
zone,” in which we may discern “a sometimes joyful, sometimes expulsive, domain . . .
that produced horizons, reverie, and insurgency” (433). These distinct registers or cur-
rents of the archive—the colonial biomedical state concerned with restoring reproduc-
tion and a vernacular zone that Hunt describes in terms of flight, refuge and, respite, and
in terms of the festive—singing, dancing, anticipation, and hope—are not parallel
domains. They sometimes intersect; importantly, the vernacular shows how the colonial
state is nervous, imagining itself to be surrounded by dangers of all kinds and developing
a security apparatus in anticipation of emergency and death (see the related discussion
in the volume introduction on the interpenetration of the biopolitical and security state
in colonial governance). This apparatus is joined in the vernacular zone by eviction rev-
erie, a collective daydreaming in which besieged natives are rescued by heroic figures
whose identity changes according to the collective imagination. As Hunt puts it, life and
death, like healing and harming in African therapeutics, intermingle in eviction reverie.
Instead of relying on the repertoire of trauma theory or assuming that what the historical
record shows in the vernacular is the loss of the real, Hunt stunningly shows how the
impulse toward life is already contained within a zone of death, and that it does not sim-
ply follow in the aftermath of an event of violence.
Together, the chapters in this section help us to look at healing as a way in which
life—or Dasein, as the existence human life takes—is the work of making these poles
speak to one another so that each contains the seed of the other.
REFERENCE
Bloch, Maurice, and Jonathan Parry. 1982. Death & the Regeneration of Life. Cambridge: Cam-
bridge University Press.
HEALING • 335
18
THINKING ABOUT THE
SECULAR BODY, PAIN,
AND LIBERAL POLITICS
Talal Asad
When we hear someone speak of a religious body, we tend to think of it as the body of a
believer. Can we also speak of a secular body? If so, what might that mean? And how is
“the secular body,” whatever it may be, related to liberalism and modernity? Does pain
have an ineradicable place in secularism? Is Christianity, with its sacred narrative of pain
and suffering, nevertheless the immanent frame of modern secularity? In what follows
I speculate about the “secular body” as the site of sensibilities and convictions, and the
ways in which it may or may not be distinguishable from a “religious body.” I do so by
paying special attention to pain, because it directs us to the human body as a finite organ-
ism. I also consider what relevance the secular body might have for secularism as a
political system, particularly as a precondition for democratic life, and whether the emer-
gence of secularism must be told in terms of a theological narrative.
Let me begin, then, with the painful body.
Consider this: I wake up one morning in deep pain; anxiety, wild speculation, and fear
follow. The pain pushes me/my body into a particular interpretive language, an interpreta-
tion that is at the same time a translation. It leads me to the conviction that I am ill. A firm
conviction about the pain as more than itself—as a clue to some hidden meaning—in the
absence of “real” evidence is usually called “hypochondria.” I refer to hypochondria not to
suggest that we sometimes misinterpret perceived objects within the external world,
including bodily sensations, or that we sometimes imagine that something exists when
it really doesn’t. I take “hypochondria” as alerting us to the fact that relations between
the self and the objective world—or between the “mental” and the “physical”—are often
337
accidental, post hoc, recursive, and practical. It is one way of problematizing the standard
distinction between the spiritual and the material, between belief and action.
Charles Taylor (2007), a leading authority on Hegel, has proposed that the “buffered
self” is a precondition of modern secularity, a self that has learned to interpret the world
objectively because it has separated itself from the world while remaining in a dialectical
(i.e., narrative) relationship with it. This reference to disjunction seems to me useful but
not quite adequate, because what matters is not simply disconnection of the body/self
from the world, but the multiple ways in which body and world have come to be severed
or yoked together. The hypochondriac’s encounter with his own feelings is real enough,
but the medical experts (and skeptical friends) tell him they are not real. The category of
“hypochondria” as an illness is, in an obvious sense, modern and secular—by which I
mean simply that it is a product of biomedicine, of an institutionalized practical knowl-
edge that presents itself as rational and progressive, and sometimes as an epistemologi-
cal model that can be opposed to theological definitions and explanations of unwellness.
The hypochondriac belongs to a modern, ruptured world; yet an individual’s deep
entanglement with the sensations of her own body (an object in the world) is not easily
described as “buffered.” Sometimes the hypochondriac’s body may be called “religious,”
but this is not because he cannot distinguish the truth of his own body from forces exter-
nal to him, and so should be called “superstitious/enchanted.” It is identified as “reli-
gious” (or “secular”) for other, more complicated reasons. What might these be? Rather
than analyzing the institutional conditions within which “religious” or “secular” attitudes
are cultivated, one might look directly at the body’s responses to pain for an answer. Pain
is a function of the living body, and the life of the secular body is finite, and so, too, its
ability to feel pain. Thinking about pain as an unsolicited—and unwelcome—state of the
body as a living body may allow one to conclude that it is not pain as such that is secular
or religious but the way it is lived by the subject. Furthermore, pain is especially interest-
ing because of its ambiguous position between the “material” and the “ideal,” or “the
secular” and “the religious.”
“Hypochondria” (like “hysteria”) tests the limits of sympathy for another’s suffering.
Although the pain, anxiety, and fear are genuinely experienced by someone labeled a
hypochondriac, in ordinary life these feelings tend to be dismissed as “imaginary” and
therefore as not worthy of being taken seriously. It is the fact that he believes he is ill when
he is not that makes him a figure of fun. That critical act of unmasking is, one might say,
a secular take on the unwell body.
But is “hypochondria” a real disease or just an imagined one? Modern medicine has now
decided that it is indeed a disease, one of several identifiable “anxiety disorders” (anorexia,
claustrophobia, etc.), and that although there may be physical disorders that indirectly cre-
ate the experience of pain, the disease known as hypochondria can be successfully treated—
or more precisely, because it is the object of investigation and therapy, hypochondria is a
psychological disease (Goodman 1994). What was once thought to be an instance of mere
illusion is now regarded as in an important sense real. The authoritative medical view
But the relations connecting belief, pain, and worldliness to one another are more
complex.
For epistemological secularists, the living human ends with death. The end is final and
there is nothing else. Pain accompanies the dying body. Left to itself, the body after death
putrefies and eventually disintegrates into its chemical components. And yet the law has
long recognized that a person’s will extends beyond death, disposing of his or her properties
in prearranged ways: the body may be cremated, but the personality of the deceased lives
on in palpable ways; indeed some aspects of that personality (its intentions regarding prop-
erty) can be put into effect only after bodily death. Henry Maine ([1861] 1950) recounted
how this legal fiction, indispensable to the continuity of secular liberal society, was genea-
logically related to “ancient beliefs” about life after death. So, too, the law’s requirement
that cadavers be treated with respect: the dead body may not feel pain, but it appears nev-
ertheless to retain the right to dignity that the person possessed in life. It is as though the
legal personality to which the cadaver once belonged continues after death, indicating that
the living organism may not always be essential to human personality. Yet this continuity of
personality bestows on the cadaver something it otherwise does not possess. Which is why
even secularists are shocked at seeing images of dead bodies thrown carelessly in a heap.
(The law finds it easier to protect the dignity of a dead body than a living one, because in
death all cadavers are evidently equal.) Is it possible to say that because it feels no pain and
entertains no illusions, the human cadaver is the ultimate expression of the secular body?
If so, this would mean that it is not a particular kind of discipline that defines secularity but
belief in an essential quality of the body. But then couldn’t one also say that the dignity it
possesses in the eyes of the living, and the reverence with which it is to be treated, bestow
on the cadaver a measure of sanctity—and therefore a quasi-“religious” status?
There is a more recent problematization of the secular body as one that rejects certain
illusions (principally, that there is life after death) and that clings to life in this world pre-
cisely because of its finitude. The anthropologist Abou Farmaian has recently produced a
rich account of the U.S.-based groups that have developed the ideology he calls “immortal-
ism.” Immortalists seek an indefinite extension of human life by the use of scientific
means—specifically, cryonics, biogerontology, and artificial intelligence. Paradoxically,
immortalism is so committed to the world that it aims to overturn a basic principle of
secular life as understood hitherto: that there is no life after death. Immortalists, Farma-
ian argues, believe that given the development of scientific knowledge, human beings can
enjoy life after death, and it is precisely their attachment to life in this world that leads them
to their faith in the truth of this proposition (Farmaian 2011).
Let me return to pain and unwellness as expressed in what Henry Maine called “cor-
poration aggregate” (the collective body) and “corporation sole” (the individual body).
God knew many heavy sins of the people, in the wildernes and after, but still he charges
them with that one, with Murmuring, murmuring in their hearts, secret disobediences, secret
repugnances against his declar’d wil; and these are the most deadly, the most pernicious.
And it is so too, with the diseases of the body; and that is my case. The pulse, the urine, the
sweat, all have sworn to say nothing, to give no Indication, of any dangerous sicknesse. My
forces are not enfeebled, I find no decay in my strength; my provisions are not cut off, I
find no abhorring in mine appetite; my counsels are not corrupted or infatuated, I find no
false apprehensions, to work upon mine understanding; and yet they see, that invisibly,
and I feele, that insensibly the disease prevailes. The disease hath established a Kingdome,
an Empire in mee, and will have certaine Arcana Imperii, secrets of State, by which it will
proceed, and not be bound to declare them. (Donne 1952, 428–29)
Implied in this text is an affinity, within the illness modern medicine now calls hypochon-
dria, between “religious”—specifically Christian—and “secular” elements, between the
refusal of the body’s fluids (blood, urine, sweat) to disclose anything of its hidden disorder
on the one hand, and secret disobedience to God on the other, between corruption within
earthly bodies and disease itself as a political form. Yet Donne’s account of his corporeal
condition is not simply a medical category mistakenly expressed in theological guise. It
assumes a particular mode of life and a polity in which some norms of health (social, theo-
logical, corporeal) are to be promoted and other norms discouraged, in which the illness,
decay, and death of the state are echoed in the disease, disintegration, and death of the
individuals who make it up. It is not just the body but the living (ensouled) body that is
invoked. In seventeenth-century political theory this affinity was expressed in the meta-
physical view that the individual in a state of nature possesses the same inalienable right
to defend himself from the threat of death as the sovereign (state) does.
“Donne,” notes Ramie Targoff (2008, 22), “was haunted throughout his life by feelings
of the awkward dissociation between his body and soul: the tensions that arose between
their respective needs; their irreconcilable states of health or illness; the occasional dis-
crepancies between their objects of desire.” Donne’s theological uncertainties led him to
agonize over the possibility that the rupture between body and soul at death might not be
healed at resurrection, to wonder anxiously whether, in being given a new, sinless body at
resurrection, his soul might not be reunited with his own familiar body. But his faith gave
him the confidence that he, John Donne, would be present—his body-and-soul as one—
beside Christ in heaven as He had promised His believers. Donne’s theological anxieties
and preoccupations entered into and shaped his poetry, his prose, and his life, making his
very act of writing into what Targoff memorably calls an instance of “the word made
Authorized possibilities of emotional expression of pain depend not only on whether they
are evoked by depictions or realities but also on how the pain expressed is recognized.
Pain, and compassion for pain, can fit into different stories. Christ’s suffering and death
on the cross is essential to the redemption of mankind, and regardless of whether it is
interpreted as divine satisfaction for human sins or as the divinely created paradigm of
human injustice, the cruelty of the crucifixion cannot be expunged from the Christian
story. In a secular key, Pamela’s suffering, in Samuel Richardson’s eighteenth-century
novel by that name, allows the redemption of Mr. B., her persecuting employer. Both
cases of suffering are directed at evoking the virtue of compassion, but Pamela’s pain is
felt to be gratuitous; Christ’s is not. Indeed, Henry Fielding’s parody Shamela suggests
that there is something about the rhetorical structure of redemption stories such as
Pamela that allows them to be satirized in a secularizing world. For secularists, publicly
exhibited suffering endured for the sake of another individual or collectivity (“a sacrifice”)
may be suspected of having an ulterior motive—one that justifies discounting its claim
to sympathy.
When pleasure is taken, in and through another person’s painful experience, by inte-
grating it into one’s desire, it is no longer quite gratuitous. If the sentimental readers of
Pamela embraced her miseries as their own, how should we understand their instrumen-
tal use of that emotion? Entering into Christ’s passion was an important part of religious
devotion in the later Middle Ages, and again in the eighteenth-century religious revival
(Mack 2008). Compassion is not unique to modern Western society of course—nor is
cruelty. What seems to be original and what links bodies to one another in different
modalities is the fusion of compassion and cruelty into what the eighteenth century
sometimes named “delight.” This theme has a long history, but the Scottish moralists
addressed it in a revealing way. Thus David Fordyce wrote in 1754 of the man of sensibil-
ity, the benevolent man: “It is true, his friendly Sympathy with others subjects him to
some Pains . . . yet to give a loose to it is a kind of agreeable Discharge. It is such a Sorrow
as he loves to indulge; a sort of pleasing Anguish, that sweetly melts the Mind.”5 Can this
be seen as articulating another aspect of the secular body?
Cultural historians have described how the idea of sympathy, first propounded by
enlightened moral philosophers, gave rise to a distinctive genre of literature and art: “If
pornography,” one of them writes, “is best defined as the representation of sexual behav-
ior with a deliberate violation of moral and social taboos, then the growing violence of por-
nography in the late eighteenth and nineteenth centuries is attributable to the new shock
value of pain within a culture redefining it as forbidden and therefore obscene” (Halt-
tunen 1995, 318; emphasis in original). Thus pictorial depictions of sexual flagellation,
virtually unknown before the eighteenth century, become common in the nineteenth and
twentieth centuries, and point like so much else to the pleasure taken in exhibitions of
I would like to thank Hussein Agrama, Gil Anidjar, and Abou Farman Farmaian for their
comments and questions on an early draft of this essay.
1. This is elegantly shown in Dillon 2010.
2. Ramonet (2004) points out that according to the statistical evidence, such violence is
as common in well-to-do families as among the poor.
3. I myself have mistakenly confused the two in Formations of the Secular.
4. Bhrigupati Singh (who is writing a book on Indian concepts of sovereignty) has reminded
me that Gilles Deleuze, in A Thousand Plateaus, drew the idea of the contract/force couple
from Georges Dumezil’s account of Indo-European concepts of sovereignty, Mitra-Varuna.
5. Quoted in Crane 1934, 205.
6. For a useful survey of the efflorescence of violent films in American cinema, see Murray
2008; see also Carroll 1990.
7. Hauerwas and Coles (2008) describe some of these attitudes by distinguishing what
they call radical democracy from liberal democracy.
8. This is a theme that Gil Anidjar has begun to explore in an original way. See especially
Anidjar 2009.
REFERENCES
Agrell, S. 2007. “It’s Wrong to Fund Private Religious Schools.” Globe and Mail, September
17. Accessed December 8, 2008. www.theglobeandmail.com/servlet/story/RTGAM
.20070917.wlibs0917/BNStory/ontarioelection2007/.
Anidjar, Gil. 2009. Jewish Blood: Metaphor and Reality in Jewish History, Culture, and Religion.
Edited by Mitchell Hart. New York and London: Routledge, 2009.
Carroll, Noel. 1990. The Philosophy of Horror or Paradoxes of the Heart. New York and London:
Routledge.
Crane, R. S. 1934. “Suggestions toward a Genealogy of the ‘Man of Feeling.’ ” Journal of English
Literary History 1 (3): 205.
Deleuze, Gilles. 1991. Masochism. Published together with Venus in Fur, by Leopold von Sacher-
Masoch. New York: Zone Books.
Dillon, Bryan. 2010. The Hypochondriacs: Nine Tormented Lives. New York: Faber and Faber.
Donne, John. 1952. The Complete Poetry and Selected Prose of John Donne. Edited by Charles M.
Coffin. New York: Modern Library.
Farmaian, Abou Ali Farman. 2010. “Secular Immortal.” PhD diss., City University of New York.
Foucault, Michel. 1972. Folie et déraison: Histoire de la folie à l’âge classique. Paris: Gallimard.
———. 1973. The Order of Things. New York: Vintage Books.
Fox, James Alan, and Marianne W. Zwaitz. n.d. Statistics on Homicide Trends in the U.S. Wash-
ington: Bureau of Justice Statistics.
Goodman, Berney. 1994. When the Body Speaks the Mind: A Psychiatrist Probes the Mysteries of
Hypochondria and Munchausen’s Syndrome. New York: Putnam.
Gorringe, Timothy. 1996. God’s Just Vengeance: Crime, Violence and the Rhetoric of Salvation.
Cambridge: Cambridge University Press.
A. David Napier
I. ILLOGICAL “SELF”
In 1960, Peter Medawar and F. Macfarlane Burnet were awarded the Nobel Prize in
Physiology or Medicine for their groundbreaking work on immunity and the role of “self”
and “nonself” in maintaining and destroying organic integrity. Medawar’s ideas on
acquired immunologic tolerance developed from his demonstration that mice “learned”
to accept foreign tissue if injected with allogenic bone marrow at or before birth—that
is, that one could tolerate difference until defensive intolerance was acquired.
Burnet’s contribution was that the body produced the protective antibody (“defender”
of “self”—i.e., anti–foreign body) for recognizing a foreign invading antigen (“nonself”—
i.e., antibody generator); and that in so doing it failed to recognize “self.” To put it simply,
one’s defense mechanism worked by not recognizing the self it protected.
By the early 1970s the idea that there was something called an “immune system” was
just beginning to take root in general practice, having first appeared in the scientific lit-
erature only in the mid-1960s (Moulin 1989, 221–22; 1991), which is why, I would argue,
its recent history is so important. This change was subtle but significant; for the science
of immunology moved away from an earlier, reactive definition of itself that went far back
into the nineteenth century to one now characterized by protection through expulsion;
an earlier belief that dramatic, hypersensitive reactions (such as in anaphylactic shock)
were “the unavoidable preliminary step in the production of immunity” (Moulin 1989,
232) now gave way to the idea that immunity once acquired stood principally as a mech-
anism of defense and boundary maintenance.
354
Immunology courses at medical schools have, since then, borne such titles as “Iden-
tity: Microbes and Defense.” As one leading introductory textbook puts it:
While normally acquired immunity is carefully regulated so that it is not induced against
components of “self,” for various reasons, when this regulation is defective, an immune
response against “self” is mounted. This type of immune response is termed autoimmunity.
In many cases, exposure to foreign substances results from clinical situations in which
tissue is transplanted or blood is transfused from one person to another. . . . Rejection of
the transplant or transfusion is not a manifestation of some force of nature designed to
frustrate the physician and the patient. Rather, such rejection occurs because of the central
tenet of acquired immunity—recognition and elimination of “not-self.” (Benjamini and
Leskowitz 1988, 10)
For several decades, the work of the early pioneers of this model defined the rapidly
growing field of immunology while inspiring our present understanding of transplanta-
tion biology. In the absence of a fully articulated and well-understood immune system
(which, to our surprise when we now look back, first appeared in the literature only in
the 1960s), no one could foresee that the human “self” was now defended by a mecha-
nism that could function only by not “knowing,” or otherwise “recognizing,” the very
“self” it was designed to look after. Indeed, this may be immunology’s first and ultimate
paradox of identity—namely, How can a mechanism defend by not identifying the thing,
the person, defended?
In successive decades (following Medawar and Burnet), several complex theoretical
models emerged: the systemic network theory of Niels Jerne, the associative recognition
theory of Melvin Cohn, and the diversified cell theories of David W. Talmage and Bur-
net—to name some important examples. Through these and others, the systemic nature
of immune function became solidified, explaining the idea of immunologic “memory”
and the logarithmic rate of antibody formation by showing how molecules could quickly
replicate on binding to an injected antigen. Through evidencing such an orchestrated
defense against what was viewed as a “pathogenic assault,” the concept of the immune
“system” became an acknowledged fact, even though yet today its very existence remains
based, to quote Cohn, the Salk Institute’s dean of theoretical immunology and head of its
Conceptual Immunology Group, “on experimental systems of such great complexity that
many interpretations are possible and reproducibility becomes a luxury” (Cohn et al.
1980; see also Cohn 1992, 1997a, 1997b, 1998a, 1998b, 1998c). Almost overnight the
“killing” and “consuming” concepts of pathogenic microbial invasion took root in immu-
nology even though at the time the nature of viruses (which I will get to in a moment)
was yet very poorly understood.
Indeed, despite early optimism about the explanatory usefulness of an immune sys-
tem structured to defend against invaders, the fundamental paradigm of immunology—
the recognition and elimination of “nonself ”—has yet to resolve the field’s major
If so much in immunology depends on what a “self” is, can what we have learned from
immunology, to reverse our terms, make possible a rethinking of our time-honored
concept of selfhood? Does immunology, to reverse our inquiry, tell us something new
regarding our cultural and historical assumptions about identity and what it is that makes
for a “self”?
Although good bench science depends on building on existing assumptions, anthro-
pologists can look toward other cultures for models of self and other; for there are many
examples (Hinduism being one famous one) in which body-image boundary is defined
by a careful familiarity with, and a regulation of, new stimuli that may in turn be helpful
or harming.
Without providing the extensive inventory of possible models that a full historical and
anthropological assessment of these questions would require—a thing, by the way, very
much in need of being done—we may and should ask what might be gained by such an
inquiry.
Are other notions of “self ” applicable in any way to theoretical immunology? To
answer this we need briefly to revisit the famous question of whether viruses are living
things; for we will see that the virus stands somewhere at the borders of “self” and “non-
self,” and is thus as much a conditioner and definer of a body’s boundaries as it is a
“single-minded attacker.”
A comparison of an excellent contemporary introduction to cellular biology (Becker,
Reece, and Poenie 1996) and any of the early popular attempts at explaining whether
viruses are living things reveals that our assumptions about the vitality of the virus have
changed little over the past forty years; for despite the fact that viruses have no mobility,
we continue to describe them as if they do. Indeed, today’s texts put the question aside
as intractable:
The question is sometimes asked whether or not viruses are living. The answer depends
crucially on what we mean by “living,” and it is probably worth pondering only to the extent
that it helps us more fully understand what viruses are—and what they are not. The most
fundamental properties of living things are mobility, irritability (perception of, and response
to, environmental stimuli), and the ability to reproduce. Viruses clearly do not satisfy the
first two criteria. Outside their host cells, viruses are inert and inactive. They can, in fact,
be isolated and crystallized almost like a chemical compound. It is only in an appropriate
host cell that a virus becomes functional, undergoing a cycle of synthesis and assembly
that gives rise to more viruses. (Becker, Reece, and Poenie 1996, 105)
The invader is tiny, about one sixteen-thousandth the size of the head of a pin. . . . Scouts
of the body’s immune system, large cells called macrophages, sense the presence of the
diminutive foreigner and promptly alert the immune system. It begins to mobilize an array
of cells that, among other things, produce antibodies to deal with the threat. Single-mind-
edly, the AIDS virus ignores many of the blood cells in its path, evades the rapidly advanc-
ing defenders and homes in on the master coordinator of the immune system, a helper T
cell. . . .
On the surface of that cell, it finds a receptor into which one of its envelope proteins fits
perfectly, like a key in a lock. Docking with the cell, the virus penetrates the cell membrane
and is stripped of its protective shell in the process. . . .
The naked AIDS virus converts its RNA into DNA, the master molecule of life. The
molecule then penetrates the cell nucleus, inserting itself into a chromosome[,] and takes
over part of the cellular machinery, directing it to produce more AIDS viruses. Eventually,
overcome by its alien product, the cell swells and dies, releasing a flood of new viruses to
attack other cells. (105–7)
When faced with a foreign invader, the immune system mounts either of two defenses. One,
humoral immunity, involves primarily B cells. These white cells recognize a particular
antigen, then make antibodies that bind to that molecule. The other depends heavily on T
cells . . . that can destroy tumors and cells infected with viruses and bacteria. These assassins,
including natural killer cells, become part of the cell-mediated immune response.
T helper cells are the sergeants that roust T or B cells into action. As helpers form in the
thymus, each becomes sensitive to just one antigen trigger. They drift in the bloodstream or
hang out in lymph nodes in a “naïve” state until they meet the antigen they were primed to
recognize. At that moment, a helper cell’s fate is sealed as either a TH1 or a TH2, or so some
researchers think. If it becomes a TH1, the cell then readies cytolytic T cells to do battle,
generating the TH1 response. As a TH2 cell, it initiates humoral immunity. . . .
These beneficial assassins can destroy a cell that has been tricked into harboring pathogens
where antibodies and TH2 components can’t get at them. (Pennisi 1994, 121; emphasis added)
But if, on its own, a virus remains inert and without locomotion, why should we
privilege it with agency? Why should we in fact refer to viruses as foreign agents, if a virus
The maternal/foetal was a good idea, but we just didn’t have the techniques, just didn’t have
the way of approaching the question. It’s something which a lot of people have actually got
into for a short time and then got out of—the immunological aspects of nature’s most suc-
cessful foreign graft [i.e., pregnancy]—how the foetus actually survives inside the immuno-
logically hostile mother. We know she is responding to antigens from the foetus. So we did
a little bit on that and then got a couple of publications. But that was a bad year. We had the
idea and we thought, wouldn’t it be nice to have got some money for it, and then we were
under pressure to deliver on the money we got from the Nuffield Foundation. . . . We weren’t
into the field enough and I must say we really didn’t get into the field because I got absolutely
seduced by host/parasite relationships. (Charlesworth et al. 1989, 214)
As a group of social scientists then studying Mitchell’s work pointed out, it is clear that
Mitchell’s own background, experience and contacts fitted him better for research into the
immunology of host/parasite relationships. He had no special background in reproductive
physiology [most immunologists didn’t prior to the era of stem-cell research] and was
unfamiliar with key techniques needed in the foetal/maternal studies—as he [Mitchell] put
it, “we were not particularly good at tissue culture.” But he was au fait with the basics of
parasitology: “I didn’t [Mitchell claimed] have the hangup, which a lot of students do have,
But Mitchell was far from alone at that time in being unsettled by the areas of embry-
onic-cell research that now dominate the science-news media; embryology had since World
War II faded in importance as microbiology grew dramatically, leaving immunology and
virology to evolve alongside and out of the studies of invasive agents and infectious dis-
eases. Why do autoimmune symptoms often subside in pregnancy? Why do women have
much higher rates of autoimmune infection (as much as seven or eight times) than men?
Might even childbirth itself, as immunologists often think, be understood in terms of
immunological rejection? These are today’s questions more than yesterday’s.
But given them (perhaps precisely because of them), we should, I would argue, persist
in revisiting our earlier question: How can viral antigens be considered foreign invaders
if our own cells animate viruses? In Darwinian evolution there is no reason for a healthy
organism to seek out something that might harm itself, except when in retrospect we call
that encounter conditioning. And, because organisms do not spontaneously endanger
themselves in a “naturally selective” world, viruses must at some level, it is assumed, be
aggressive killers, even if they are actually inert until brought to life by a cell.
There is, however, another possible view—namely, that antibodies are a key to exploring
the dividing line between self and other, a mechanism by which one’s identity, as a living
thing, becomes contested and eventually defined. Identity, in this sense, remains—to the
considerable relief of immunologists—a prior and persistent condition, but one that is now
defined at the peripheries of selfhood, where it is contested and challenged. If we can
accept such a view of identity (one widely evidenced in the anthropological literature), there
is only one logically consistent and satisfying conclusion to be drawn: namely, if viruses
need cells to come alive, the so-called immune self (our antibodies) must attract, or other-
wise absorb, those potentially pathological viral antigens. We know, that is, who we are by
the risky, dynamic, and sometimes painful process of discovering what we can and cannot
accommodate. “If you can’t stand the heat,” as Richard Nixon was so fond of repeating ad
nauseam, “get out of the kitchen”—survival, in this view, being predicated on stepping
forward, “taking the heat,” and hopefully doing something with it besides caving in.
Although a completely different paradigm, the notion that antibodies absorb poten-
tially harmful bits of inert matter to transform (for better or worse) their packaging of
information actually makes good sense and withstands all logical trials we might set
against immunology’s major conundrums; for an antibody is the tool that enables a living
thing to explore the boundaries of life—to engage that danger that is the precondition of
real change, whether that change be life giving or life taking. Although many may find the
concept of inviting danger intolerable, in some non-Western notions of selfhood it is
considered both logical and coherent. There are multiple anthropological examples of how
self is made up and defined by potentially dangerous encounters at one’s boundaries.2
3 60 • A. DAVID NAPIER
I I I . N O N S E L F H E L P : C O M P AT I B I L I T Y R E C O N S I D E R E D
I have suggested how an alternative view of viral activation—one arising from within
cotemporary immunology—can reframe immunology’s former “paradox of identity”; but
what of its other, more vexing paradoxes? Can this assimilative view of viral life also
reframe them? Let us briefly apply such an interpretation to two other outstanding and
famous paradoxes of theoretical immunology.
First, the Evolutionary Paradox (Silverstein 1989): How can the human body continue
to create a broad-specificity repertoire—a wide range of “B” (bone marrow) and “T”
(thymus) white blood cells—when natural selection would otherwise demand that appar-
ently superfluous “deformations” be eliminated?
The answer is that, in an anthropologically and historically informed model, natural
selection is no longer a problem because the body is creating possible versions of “other-
ness” rather than mutations of “self”—that is, the bone marrow (“B”) and thymus (“T”)
cells explore “otherness” rather than defend “self”; for the human body appears to pro-
duce an extraordinary number of antigen-inducing antibodies. Indeed, estimates of the
human antibody repertoire run from 105 to 1016. And if these figures weren’t already
mind-boggling, “because most antigens have many epitopes [i.e., amino acids or sugar
residues that are antigenic—“outside”—determinants] and a given epitope can be recog-
nized by more than one lymphocyte [response cells in the lymph nodes], the number of
lymphocytes that can respond to a given antigen is much larger than the number of cells
possessing a certain antigen receptor” (Becker, Reece, and Poenie 1996, 788).
According to natural selection, these numbers should be naturally limited. Superflu-
ous creations should be eliminated. Bodies don’t, for instance, spontaneously generate
organic variations in anticipation of unanticipated events. In evolution the body responds
and adjusts to stimuli; it does not create spontaneous mutants, or at least does not do so
as a function of health-enhancing activity. Saltation—sudden and unexpected change—
troubled Darwin; it was thought unnatural.
Since, however, cellular diversity by definition proliferates in immunology, this so-
called immunological repertoire appears “paradoxical” to immunologists when it creates
mutants that have no apparent target. A body should not produce spontaneous, experi-
mental deformities in anticipation of a single cellular mutation out of millions upon
millions that might be useful for some future, unknown threat. Furthermore, for binding
to take place, an antibody must be created with a locking mechanism that works for an
unknown antigen. This makes no sense either, because variation, by definition, is infi-
nite—unless immunologists, as have some evolutionary biologists, come to accept the
possibility that antigens develop from the nucleic acids of normal cell genes (i.e., out of
the attenuated nucleic acids of [as it were] “former selves,” or at least something very
much like them).
If this connection between pathology and prior normality is posited, what of
antibodies—those mutations we generate in anticipation? Might they not be seen, then,
3 62 • A. DAVID NAPIER
Today, then, immunology sees itself quite differently, and, I would argue, is well posi-
tioned—perhaps better positioned than any other domain of modern science—to help
us rethink notions of the self that have dominated Western philosophy at least since the
Enlightenment; for it is with the Enlightenment that we get the birth of scientific agnos-
ticism and the first consistent argument for a prior and persistent person that is not
predicated on divine intervention.3
Compare the “recognition and elimination” model of immunity with, for instance, a
recent Salk Institute discovery that certain skin cells with a hereditary blood disease
called Fanconi anaemia could be reengineered to revert to stem cells, which could then
be recommitted by use of a virus. What this means is that the repaired cells—constructed
by reverse engineering to a naive stem cell and then, as it were, reinfecting it—can now
be used to replace the defective bone-marrow cells characteristic of a disease that also
results in very low blood-cell counts. A cure becomes possible because, rather than sup-
pressing immune responses, we reshape them by encouraging and feeding novel viral
information—information of a new type that one day may well lead to therapies for what
were once incurable genetic disorders.
What made this possible, I would argue, is an unrecognized but giant leap that has
almost subconsciously become a core immunological precept—namely, that viruses do not
invade us. We, for better or worse, bring life to the sometimes dangerous encounters that define
the limits of who we are, that limit what we can be, and that (hopefully) do so without taking
the very life that those viruses, once embodied, now inform—or, as we used to say, infect.
Burnet’s antibodies, which recognize “foreignness” (“nonself”) but fail to recognize
“self,” are now replaced by antibodies that function as “self” search engines—search engines
for the information (harmful or helpful) that sits latently in viruses like books in a library.
If, as evolutionary biologists now widely suppose, pathogens evolve from normal cell
genes or entities much like genes (for how else can they bind with cell surface recep-
tors?), what our antibodies must be recognizing are as much aspects of selfhood as aspects
of foreignness. The difference made possible by this view is neither subtle nor semantic;
for it shows us that cellular antibodies risk bringing life to alien viruses to revitalize these
biologically binding—and therefore related, even if dangerous—forms of “self ” so as to
adjust and respond to them. In this view the “self” stands not only as something prior
and persistent but also as a living thing capable of constantly re-creating and reclaiming
its identity through engaging viral information.
“Know your friends well, your enemies better.” Thus understood, the body interacts
with its environment in an attempt to create a new future. Burnet, who said “it could be
no other way” than for antibodies to fail in recognizing “self,” did not suspect that there
was another way of resolving immunology’s paradoxes—a way that might change how
we view the self and its environment. Part of this not knowing was because of immunol-
ogy’s evolving out of cell biology—where real organisms do attack one another. Part of
this was because we needed molecular genetics and stem-cell research to demonstrate
the real advantages of modifying and loading cells over killing them off.
N OT E S
1. For further discussion, see Napier 2003a. See also Cohen 2004, 2009; Martin 1990,
1994; Moulin 1989, 1990; and Napier 1996a, 1996b.
2. See several examples in Napier 2003a and 2003b. On the idea that identity is defined
at its peripheries, see Fredrik Barth’s landmark Ethnic Groups and Boundaries: The Social
Organization of Cultural Difference (1969).
3. More specifically, I say “Enlightenment” because Descartes begins his own Meditations
with the claim that he is about to embark on his famous exploration of (self-) consciousness,
and that (like a modern-day “infectious” virus) he comes forth masked.
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Liss.
Carosella, Edgardo D., and Thomas Pradeu. 2006. Transplantation and Identity: A Dangerous
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———. 2010. L’identité, la part de l’autre: Immunologie et philosophie. Paris: Odile Jacob.
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et non-soi, individu et personne. Paris: Presses Universitaires de France.
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———. 2009. A Body Worth Defending: Immunity, Biopolitics, and the Apotheosis of the
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———. 1997b. Some Thoughts on the Response to Antigens That Are Effector T-Helper
Independent (“Thymus Independence”). Scandinavian Journal of Immunology 46:565–71.
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———. 1998a. At the Feet of the Master: The Search for Universalities; Divining the Evolu-
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———. 1998b. A Reply to Tauber. Theoretical Medicine and Bioethics 19:495–504.
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———. 1994. Flexible Bodies: Tracking Immunity in American Culture from the Days of
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———. 1990. La Métaphore du soi et le tabou de l’auto-immunité. In Soi et non-soi: Des
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———. 1991. Le dernier langage de la médecine: Histoire de l’immunologie de Pasteur au
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———. 1992. Foreign Bodies: Performance, Art, and Symbolic Anthropology. Berkeley: Uni-
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———. 1996b. Unnatural Selection: Social Models of the Microbial World. In Proceedings,
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———. 2003b. Stressful Encounters of an Immunological Kind: The Social Dimensions of
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3 66 • A. DAVID NAPIER
20
SECULAR HISTORIES,
SAINTLY RETURNS
Death and Devotion in Modern Turkey
Christopher Dole
In 2005, while visiting a saint whose ability to perform miracles—especially for the sick
and dying—had attracted a modest following in Turkey, as well as having earned her the
title of evliya, or “saint,” I was invited by a group of her followers on an excursion to a
nearby tomb. Our trip was meant to celebrate the circumcision of their sons, and the
destination was specifically recommended by the saint, Zöhre Ana. As we traveled
through the streets of Ankara—through outer squatter neighborhoods, new yet rapidly
decaying industrial districts, blocks of upscale apartments—I learned that this would be
not a typical tomb visitation but a trip to Anıt-Kabir, the final resting place of the great
revolutionary leader of the republic, Mustafa Kemal Atatürk. The irony of this pilgrimage
was inescapable. Atatürk, Turkey’s arch-secularist and modernist founder, ardently
opposed the forms of popular Islamic practice represented by Zöhre Ana, and once
remarked venomously that it was “a disgrace for a civilized society to appeal for help from
the dead” (Mango 1999, 435; cited in Soileau 2006). Yet for my fellow travelers, Zöhre
Ana was the inheritor of Atatürk’s spirit (ruh) and a person through whom Atatürk, as a
deceased evliya, was able to speak again to the living.
Upon arriving at Anıt-Kabir, we joined the lines of tourists trailing into the mauso-
leum. As we passed in front of the tomb’s marker, the group suddenly took formation,
with circumcised children in front and others lined up behind, their palms turned
upward in prayer. Security guards appeared immediately. Descending from the rear, they
ordered the group to move forward. The saint’s followers asserted their freedom to wor-
ship as they pleased. The guards, enraged, insisted that this was no place for “worship.”
367
The argument continued to escalate as guards began to push men in the group. Tourists
gawked and took photos. Eventually, the group relented, returning to their cars and
traveling back across the city to the saint’s compound to continue celebrating their boys’
circumcisions.
In time, I would come to understand this confrontation between the followers of a
saint who gives voice to the nation’s dead founder and government officials laboring to
regulate how the state and its past are venerated as a public staging of what I had been
hearing with unexpected urgency in the stories of suffering and loss I encountered over
the course of my research. That is, to recount one’s experiences of healing and being
healed was not only to reflect on one’s experiences of personal and familial loss. It was
also, and simultaneously, to engage in a series of interlocking struggles over the status
of death, loss, and devotion in relation to state power. And it would be in accounts of
those seeking the assistance of healers and forms of care outside the country’s network
of state-authorized health clinics and hospitals—among a diverse collection of Qur’anic
healers, living saints, and religious figures offering miraculous cures—that I would find
these political-therapeutic entanglements growing especially dense.
In this chapter I want to examine the efforts of a living saint, Zöhre Ana, to find a
voice and a home within Turkey’s project of secular modern development. Here I am
particularly interested in considering how Zöhre Ana’s saintly engagement with secular-
ism embodies what Achille Mbembe has described as a certain “conviviality” of power.
For Mbembe, relations of power defined in convivial terms are not to be reduced to a
dynamic of opposition or resistance, but should be recognized instead as processes of
mutual borrowing—where “officialdom” and “popular vulgarity” rely on one another’s
repertoire of idioms and forms in a common desire for “majesty” and “grandeur”
(Mbembe 2001, 110). Relationships of subjection, as Mbembe argues, are thus marked
not simply by disjunction and opposition but by familiarity and domesticity, in that state
power and the “popular world” share a common living space (2001, 110). With this for-
mulation in mind, I want to examine how the conviviality of secular state power and
saintly revelation in Turkey unfolds as a distinct problem of relating death to life, one
that will reveal both the infidelities of secularism as a social reality and the forms of
violence that were its conditions of possibility.
S E C U L A R R E F O R M A N D T H E P R O B L E M O F D E AT H
It is not incidental that the visit of Zöhre Ana’s followers to Atatürk’s tomb caused such
an uproar and, beyond the tomb, that Zöhre Ana’s saintliness reliably stages larger social
commentaries about the status and future of Turkey’s secular modernity. Although fig-
ures such as Zöhre Ana, and religious healers more generally, would seem marginal if
not irrelevant to prominent struggles between “Islamists” and “secularists” over political
power—struggles that have become imagined as the primary if not exclusive site for
working out new models of secular democratic rule in the Muslim world—the history of
3 68 • CHRISTOPHER DOLE
secular reform in Turkey turns in no small measure on the figure of the religious healer,
and the sorts of authority he or she embodies. In order to understand the distinctive ways
that secularism and death configure in Zöhre Ana’s saintly discourse, we need to appre-
ciate first the historical specificity of Turkey’s project of secular modernity.
In Turkey, the concept of secularism, or laiklik, occupies a fundamental position in
the nation’s vision of its own past, the limits of the present, and the possibilities of
political futures.1 Under the influential leadership of Mustafa Kemal Atatürk, political
reformers of the 1920s and 1930s conceived secularism as a project of political and soci-
etal regeneration. It was not only to function as the cornerstone of national sovereignty
and offer an integrative framework for binding an ethnically, linguistically, and reli-
giously fragmented society; it was also to serve as the basis of individual and collective
liberation, an encompassing project of world and subject making that would leave no
aspect of social life untouched. Unlike elsewhere, the secularization reforms of this
period did not aim simply to separate religious and political institutional structures. As
a new nation emerged from the remnants of an Ottoman state organized around inter-
dependent political and religious institutions, secular reformers sought to remove reli-
gious institutional influence from state structures, regulate public forms of religious
expression, subordinate Islam’s role as a binding force of the polity to Turkish national-
ism, and restrict religion to a matter of personal or private concern. An overarching aim
of these reforms was to consolidate a version of Islam that would be both amenable to
state regulation and appealing to an emerging nation of scientific-minded citizens. Con-
sequently, the conception of Islamic orthodoxy that emerged in this period was itself
constituted to a significant extent by the reforms undertaken in the name of secularism
(see Asad 1993, 2003).
Rather than incorporating saints, shrines, and religious orders into state-sponsored
forms of Islamic religiosity, a central aim of the state’s efforts to sort acceptable from
unacceptable forms of religiosity was the elimination of the institutional infrastructure
of religious orders. By 1925, the country’s network of religious orders and lodges, many
organized around the tombs of holy persons, would be legally prohibited and forcibly
closed. In addition to eliminating religious institutional structures deemed threatening
to the state, secular reformers also sought to submit the remaining religious institutions
to government regulation. It would be during this period, for instance, that the state
would assume control of the education of religious professionals, and positions such as
imam and mufti would become government appointed. Alongside these efforts to regu-
late religious institutions and subvert bases of political opposition found among the
country’s network of religious orders, the forms of religiosity associated with the venera-
tion of saints would also emerge at this time as prominent targets in the state’s effort to
eradicate the sorts of “superstition” deemed contrary to the national and technological
promises of a rationally organized society.
In the state’s struggle against “superstition,” the therapeutic claims of the saint and
other forms of religious healing would become entangled in an emergent politics of truth,
S A I N T LY S P E E C H A N D S E C U L A R W O N D E R
I want to begin to address these questions regarding death, secularism, and saintliness
by attending first to the distinctive form of speech for which Zöhre Ana is renowned—
namely, her nefesler. As both basis and evidence of her miraculous ability to intercede with
deceased evliyas, Zöhre Ana’s nefesler (pl. of nefes) are forms of divinely inspired poetic
speech that emerge from her entrance into the umman (literally, “ocean”), a state in which
she is overcome by the presence of visiting saints and through which they are able to
speak again to the living.2 Zöhre Ana’s nefesler give voice to a long genealogy of saintly
There is little that distinguishes this from other nefesler. As with a typical nefes, a deceased
evliya holds forth before his audience, recounting the major events of his life, confirming
his position within an ancient saintly genealogy, castigating those who presume to under-
stand God’s intentions, and criticizing unwelcome developments in contemporary society.
We also encounter a characteristic ambiguity surrounding the authorship of individual
nefesler. Although a nefes may issue from Zöhre Ana’s body (and one could well question the
extent to which this speaking body, at these moments, belongs to Zöhre Ana), the identity of
the speaking subject regularly shifts over the course of an individual nefes. Nefesler that begin
with the visiting saint speaking in the first person to Zöhre Ana may well end with Zöhre
Ana, as the primary speaker, addressing the visiting saint. Like other nefesler as well, there is
a distinctive spatiality to this nefes, an enumeration of names of significant sites that map a
recognizable geography of saintly manifestation. In addition to signaling the (miraculous)
ability of her nefesler to bring together figures and landscapes from the sweep of history into
a single (linguistic) setting, such a genealogy of names, spaces, and events also designates
Zöhre Ana as the manifestation of an ancient voice, with a capacity to speak that has passed
along an unbroken chain of holy figures who share a common spirit, or ruh.
It is important to note that Zöhre Ana and many of her followers are Alevi, a Shi’i
religious minority estimated to comprise 15 to 20 percent of Turkey’s population.
Although Alevism encompasses a complex set of interdependent religious, political, lin-
guistic, and ethnic associations, Alevis are widely acknowledged for their long-standing
commitment to secular democratic reform, especially as it is personified in the figure of
Mustafa Kemal Atatürk.8 Although we could thus read Atatürk’s appearance in Zöhre
Ana’s nefesler as an extension of the admiration for Atatürk common among Alevis, I
want to underscore the paradox of Atatürk’s presence by drawing attention to the specific
historical context of its enunciation—namely, his speaking through Zöhre Ana today. It
is here that we can appreciate Zöhre Ana’s nefesler as a distinctive convergence of lan-
guage and death within secular regimes of truth and history. In particular, these shifting
capacities of speaking and inhabiting space that characterize her nefesler, and especially
the aura of “past-ness” that enframes them, will prove important for our consideration
of the configurations of death and secularism that animate her saintliness.
To extend this discussion of the relationship between death, saintly revelation, and secu-
lar reform, I want to turn from Zöhre Ana’s nefesler to their material externality—namely,
the complex of buildings where she receives visitors and where the majority of ritual
activities occur, a space commonly referred to as her dergâh. Built according to architec-
tural plans that came to her in a series of visions while in the umman, the dergâh is
designed to signify the singularity of Zöhre Ana’s saintliness. While resembling the
pragmatic and utilitarian modernist vocabulary of much of Turkey’s urban architecture—
cement buildings composed of repetitions of parallel lines and corresponding angles—it
also expresses a series of departures, particularly in its need to accommodate a range of
specialized activities (e.g., spaces for communal worship, an area for performing sacri-
fices, a kitchen and cafeteria, a wedding salon, a gift shop, a tea salon, numerous guest
rooms, an area for preparing bodies for burial, and the administrative offices of her
foundation). For our purposes, I am interested in the building’s underground existence.
In sharp contrast to the design and organization of space in the main building, much
of the dergâh’s subterranean structure has been enclosed and modeled to resemble the
interior of a cave. Constructed with walls of textured cement, this space consists of an
area cordoned off for receiving visitors, a fireplace for cooking, a simulated well, a series
of small ponds lining the walls, a lion-shaped spigot dispensing sacred water (zem zem),
and myriad items labeled “antiquities valuable to history” strewn across the floor and
hung on the walls. When the area is staffed—as is often the case on spring and summer
weekends—visitors will find female followers reenacting a version of domestic village
life: women wearing loose-fitting combinations of homemade sweaters, skirts, and head-
scarves sitting before the open fireplace cooking gözleme (a popular stuffed flatbread) that
is to be blessed by Zöhre Ana and sold upstairs in the gift shop. The overwhelming aes-
thetic of the cave is of a self-consciously construed traditionality—what one reporter, after
a visit to the dergâh, referred to as its underground “culture complex” (kültür kompleksi)
(“Zöhre Ana Yolun Sonunda” 1999).
S E C U L A R H I S T O R I E S , S A I N T LY R E T U R N S
What then are we to make of the return of these histories of secular reform in contem-
porary manifestations of saintliness in Turkey? How are we to listen to the voice of a saint
struggling to find a home in a political order constituted in opposition to the very powers
she claims? By way of a conclusion, I want to turn briefly to a religious tradition and set
of events seemingly far removed from our concern with saintliness in contemporary
Turkey: the epidemic of demonic possession and accusations of sorcery that gripped
seventeenth-century France, which led up to the well-chronicled trials at Loudun. In his
N OT E S
1. Although I translate the term laiklik as “secularism,” some argue that it is better trans-
lated as “laicism” to capture the specificity of Turkey’s model of political secularism (Davison
1998, 2003; Parla and Davison 2008; White 2002; Berkes 1964). Although the term laicism
might have the benefit of being a closer linguistic approximation of laiklik and thus better
capture Turkey’s indebtedness to French models of laïcité, I will use the term secularism—
although imperfect—as a larger category within which laicism could be included. For addi-
tional studies of the historical specificity of secularism in Turkey, see Kuru 2009 and Tapper
and Tapper 1987.
REFERENCES
Anderson, Benedict. 1991. Imagined Communities: Reflections on the Origin and Spread of
Nationalism. London: Verso.
Asad, Talal. 1993. Genealogies of Religion: Discipline and Reasons of Power in Christianity and
Islam. Baltimore: Johns Hopkins University Press.
———. 2003. Formations of the Secular: Christianity, Islam, Modernity. Stanford, CA: Stanford
University Press.
Bernadette Wegenstein
I have studied the phenomenon of cosmetic surgery both historically and ethnographically:
as a media scholar and feminist theorist in my book The Cosmetic Gaze: Body Modification
and the Construction of Beauty (2012); and as a cinema verité filmmaker in my most recent
project, the documentary feature The Good Breast.1 In studies whose foci range from the
eighteenth-century Swiss physiognomist Johann Kasper Lavater to today’s televisual
extreme-makeover shows, I have found a persistent connection between beauty and the
promise of moral betterment and happiness. A person’s transformation of her body through
cosmetic surgery is not inspired by a single principle, be that rejuvenation, aesthetic change
in the service of an internalized racism (Munzer 2011), or sexism (Blum 2005; Weber 2005).
Rather, while these cultural hegemonic principles are definitely real and the female body
is one of the first places to showcase them, I am interested in the extent to which this change
of the body is experienced as a “greater good” to the person undergoing it.
One can trace this sense of bettering or “self-improvement” to the principle of the Pla-
tonic (and pre-Platonic) kalokagathia (literally, beautiful and good) that started to evolve in
the sixth century b.c.e. At that time, the new social class of Athenians was no longer
defined purely via an aristocracy by birth but rather via an aristocracy of merit and money
organized around the implicit mandate: You must improve and better yourself in order to
thrive! In other words, this physical change aims at framing a moral change from good to
better that is supposed to overwrite the subjective impression of “appearance,” and that
expresses itself on the “outside” while pointing to a happiness that is more than skin-deep.
It is at this intersection that my study of cosmetic surgery—what Meredith Jones has
382
labeled makeover culture’s most quintessential expression (2008)—connects with my
research into the culture and history of breast cancer, an illness that, as S. Lochlann Jain
(2007, 505) has it, “demands a surrender to femininity and to the mortality doled out by
the feminine body.”
I came across breast cancer via my interest in cosmetic surgery and the construction of
beauty, and their place in twenty-first-century makeover discourses. I was specifically curi-
ous about the overall increase in demand for breast augmentation in the United States over
the past decade.2 I wondered if there was a connection between breast cancer and cosmetic
surgery, and to what extent women’s suffering through the loss of the breast due to cancer
was related to the Christian theme of martyrdom and the consequent idea of being
rewarded with a new and better breast after surviving this life-threatening illness. I started
working with twelve breast-cancer patients at the Greater Baltimore Medical Center, a top
U.S. breast clinic, where I learned that about half of the patients diagnosed with breast
cancer who have to undergo a single or a double mastectomy opt for either breast augmen-
tation or (rarely) reduction to customize their breasts to their individual needs and imagina-
tions—as well as those of their partners, children, and others. This suggests that about half
of the estimated breast-cancer population for 2013—that is, more than one hundred thou-
sand women3—had cosmetic surgery done on their breasts, amounting to about a third of
all breast augmentations listed by the American Association for Aesthetic Plastic Surgery.
While this is an interesting fact per se—one that demands attention and more quali-
tative interpretation than I can currently provide—this chapter deals in particular with
beauty’s “dark side,” with the question of the “good” and the “bad” breast, and with the
coupling of a deadly illness such as breast cancer with the question of the makeover’s
irresistible promise of happiness through, despite, and even because of an illness such
as cancer. As Susan Sontag and others have shown in their semiotics of cancer, there is
a long history of interpreting breast cancer as something bigger or “other” than its biol-
ogy—that is, the uncontrolled division of a single cell. In 1826, for instance, the English
surgeon and anatomist Sir Astley Cooper said that “grief and anxiety” provoked a wom-
an’s breast cancer (quoted in Bradley 1852). This perspective resonated with the story of
one of my current documentary characters: that of Doris, whose boyfriend, Randy,
explained that she got cancer because she was “too stressed out” and because she “went
back to school”—not a woman’s place. In The Good Breast, her experience with breast
cancer and reconstructive surgery is shown in full detail.
Innumerable testimonies of cancer patients have shown that they can experience the
overcoming of a life-threatening illness such as cancer as rebirth and a chance at a sec-
ond life. In particular with the case of breast cancer—more so than, for instance, the
experience of pancreatic cancer—enduring the loss of a part of one’s body has been a
source of women’s desire to share this experience as something existential and an oppor-
tunity for expressing who they are or are not as a person and as a woman. The reason for
this is obviously the fact that a pancreas does not have the symbolic power to stand in for
the whole body or identity of a woman. There is a quite expansive literary and cinematic
I have described the place where beauty and death unite as “beauty’s dark side” (Wegen-
stein 2012, 61–97). This is strongly connected to the ancient concept of femininity and
female beauty as masquerade. While beauty is related to the “good” of agathos (see the
story below of Saint Agatha), it is equally related to the concept of desire. Thus beauty is
not something static or eternal but something that we want and desire to acquire or achieve:
every promise of beauty has a vector of desire built into it that says, “I want beauty”; beauty
always aims at something beyond itself. Going back to the physiognomists of the eighteenth
century and their wish to understand facial expression as revealing a moral behavior
underneath the skin, the fear of a “beautiful appearance” is always an expression of the
fear that underneath beauty’s perfection and seduction are hidden the abyss and the ugly,
which can “erupt” at any time. This cultural topos expresses precisely the idea that beauty
is an acquired good, one that need not have always been the way we see it here and now.
What does this mean for breast cancer and cosmetic surgery? Perhaps the beautiful
breast that has been reconstructed on the site of “ugliness” where cancer revealed itself
But Agatha warns the prefect once more, “You cruel, inhuman tyrant, do you not feel
shame for taking away a woman’s breast, from which you yourself have sucked on your
mother? But I have other breasts, that are intact, in my most intimate soul and with which
I nurture all my sentiments.” Agatha’s breast sacrifice turns her breast into Klein’s primal
good object. Sebastiano del Piombo has rendered her sacrifice with a masculinized Agatha,
whose “quasi-phallus-shaped knot in her drapery” (Richter 2006, 27) has been compared
to a stand-in for Christ, and her torture a visual allusion to the crucifixion itself. Agatha, “the
good,” sacrificed her breast not as an organ that represents fertility, reproduction, and moth-
erhood, but as the symbol of the sacred and the untouchable. Hence, her sacrifice becomes
the primal sacrifice by which a loss is turned into a gain, her disfigurement into an aesthetic
experience of beauty, and her bad breast into the good and unattainable “über-breast.”
T H E G O O D B R E A S T: A D O C U M E N TA RY I N P R O G R E S S
In the second half of this chapter, I would like to attempt the academically “forbidden”
and perhaps “unthinkable”—which is to apply the above concepts to four of the living
cinema verité characters in my documentary The Good Breast.8 “Forbidden” because
cinema verité supposedly finds the truth in the field and not the other way round
(although, as Errol Morris says in Believing Is Seeing [2011], “seeing is also believing”), and
“unthinkable” because I want to present these four characters and their desire for cos-
metic change and beauty within the experience of their mortality from the point of view
of the semiotic square of breast cancer—a qualitative schema that is based not on data and
extensive field work, but entirely on interpretation (Greimas 1966). During the film’s
editing process we were looking for its story—a normal procedure that, especially with
cinema verité, can reveal something different from what one set out to produce. One of
depressions in her thighs that Elizabeth wants smoothed out. She is also dissatisfied with
a “dog ear” at the end of her scar; additionally, her right hip feels flattened out, but on her
left hip there is still extra skin, which she would eventually like to have removed. Finally,
the abdominal scars on her hips require more work. She underwent a last cosmetic inter-
vention to fix these features in the fall of 2014, three years after her original diagnosis.
As Elizabeth puts it, “I feel I am so much of a better person after being through this. I feel
just like Jesus Christ. Seriously, I am more of a conqueror. I have overcome so many things
that I would not even have realized. [Like what?] Such as being willing to be vulnerable to
people. I say what I really think. I am an influence for positive overcoming. Being able to
encourage other people that they can get through a trial. Be those financial problems, mari-
tal or health problems . . . there is always something that I can draw on from my experience.”
Elizabeth says she is now truly satisfied, more so than ever before, with who she is.
Her breast cancer was a process and a trial to help her become a more beautiful human
being, not only physically (she finds her body definitely more attractive than it was
before), but in her relationships, which she feels are a fuller and richer experience; “I like
the new person better.” The most interesting aspects of her testimony are the emphasis
on the theme of the breast sacrifice. Elizabeth’s renewed, middle-aged beauty, and a feel-
ing of femininity that she says she had never felt before as intensely, reveal themselves as
a makeover strategy to becoming a better person.
Debra Nelson, a fifty-six-year-old nurse from Baltimore, was diagnosed with stage 0 DCIS
in 2009 at age fifty-one. Her biopsy revealed that one axillary lymph node was positive,
while her sentinel lymph nodes were all clear of cancer. After a long reflection with her
breast surgeon and the plastic surgeon, Debra decided to have a single mastectomy on
In figure 21.3 we see Debra at what she herself calls her “six-month self-imposed doc-
tor’s visit” with her plastic surgeon, Dr. Sheri Slezak. During this visit Debra expressed
her desire to have a nipple exchange. Her reasoning revealed her psychological confusion
over her own body trauma. The following are portions of the transcript of Debra’s visit
with Dr. Slezak from November 30, 2011, during which she displays a clear confusion
over two paradoxical sensations in the nipple that showcase her breast trauma: on the
one hand, the rubbing of her own “good” nipple against her shirt, which she says bothers
her as a marathon runner; and on the other hand, the lack of sensation in the nipple of
the “bad” breast due to the missing nerves. In other words, the good nipple in Debra’s
mind is “too good” and the bad nipple “too bad.” The doctor listens to Debra’s needs and
decides that nipple sharing may be the answer to her problem.
dr. sheri slezak: Has it [the sensation] changed at all over the past six months to a year?
debra nelson: Not really. It’s not just the fact that it’s numb. I mean, I have
sensation, it’s just not pleasurable.
dr. s: So you can feel it being touched but it’s just not pleasurable? That’s
interesting.
dn: Yeah. And this nipple [points to the right, healthy breast], as you
said, “You have dominant nipples.” [Laughs.] It still rubs against the
inside of a bra, and it is just kind of annoying to me. So I didn’t
know if there was anything you could do with it.
dr. s: Well, so do you think it’s the size of the nipple?
dn: Yeah. The protrusion.
dr. s: Because you could certainly make it smaller. But would that help, is
the question.
dn: But it wouldn’t rub inside of a brassiere then.
dr. s: Can I look? [She examines her.] Looks great. Perfect shape. One of
the best that I’ve ever done. [They talk about how they both enjoy the
3 90 • BERNADETTE WEGENSTEIN
documentary crew filming Debra’s beautiful breasts.] So this nipple
bugs you when you’re in a bra, and it chafes?
dn: Yeah. And I’m still running.
dr. s: Yeah, well, I hear that from women who haven’t gone through what
you’ve gone through. Like marathon runners have bleeding nipples
and they get really irritated.
dn: It’s not that bad.
dr. s: You can make it smaller, but the more you cut away, the more chance
you have of more numbness. So you say right now you can feel it, but
it just isn’t pleasurable. Would it be better if it were numb? Like, does
it actually hurt?
dn: Sometimes.
dr. s: So you certainly could make it smaller. But I’m kind of surprised
that you asked that, because that’s your normal side.
dn: I know. I know. And I liked it before, I mean when I had two
that size. But after the augmentation, it became even more pro-
nounced.
dr. s: And it’s true. When you augment, your breast is more forward, so
you probably see it more than you used to.
dn: Sure.
dr. s: But would smaller be better? Is that the question? A smaller nipple?
Not sticking out as much?
dn: In my mind, that’s what I wanted to talk with you about. So you’re
saying one of the consequences could be that there would even more
change in sensation?
dr. s: Yes. So what you’d do is essentially what you did before, the nipple
sharing—you’d take the lower half and make it even a little bit
smaller, which would match this one better. Do you ever want that
one bigger?
dn: Well, you said something one time about putting a little purse string
around it?
dr. s: I could do that, but if you want that one smaller I could take a little
bit of that and put it over here again.
dn: Oh really?
dr. s: Yeah.
dn: And you think it would take again?
dr. s: Mmm-hmm. Nipple sharing.
dn: You could do it as an outpatient? [Looks excited and satisfied.]
Two weeks later, the plastic surgeon performed the nipple exchange and, still under
local anesthesia, Debra felt much better. Debra has been going back to her doctors, the
Katherine (Katie) Martinez is a PhD student working in Cancer Prevention and Treatment
Demonstration at the Department of Epidemiology at Johns Hopkins Bloomberg School
of Public Health.13 Katie was diagnosed with a 1.7 cm invasive ductal carcinoma through-
out her breast at the young age of twenty-seven in 2009. After a successful chemo treat-
ment, her lymph nodes were clear of cancer, yet her tumor had a high KI-67 proliferation
index and was moving very fast.14 The FDA approved the drug Herceptin, used to treat
HER2-positive metastatic breast cancer, the day Katherine was diagnosed. Her breast
cancer was in fact HER2-positive, and Herceptin saved her life. At the time of her diag-
nosis, Katie was married to a man and was trying to get pregnant. She had to undergo
several lumpectomies, and four difficult treatments with the chemo drug Taxil that led
to the yellowing of her skin and abrupt menopause. In addition, she experienced nausea
and depression during the entire treatment.
After this experience, Katie elected to have a double mastectomy and breast recon-
struction. Further, she divorced when she realized she was gay. Katie reports having
experienced a sexual reawakening in a newly found masculinity that gave her a new
sense of beauty and self-esteem. In a way, by negating her hetero-normative femininity,
she was able to regain strength and find new love as a lesbian. She remembers how her
illness influenced her heterosexual relationship in a negative way: “I had a husband and
3 92 • BERNADETTE WEGENSTEIN
he was physically present but he was like addicted to the video game World of Warcraft.
It was like his escape route. When I was sick, he would put on his headphones and play
that. I spent a lot of time lying in bed watching movies, and he never came in and
watched a movie with me or anything, so it was pretty lonely.”15
Katie talks about her femininity as a heterosexual woman before her cancer diagnosis
and a gay woman afterward:
I don’t think femininity is something that is determined by parts, but instead it’s in your
brain. And the way you see yourself and the way you interact with the world. I was always
in a way better position dealing with these things. I have always been pretty confident,
sexually independent. I have not felt shame about my body in my lifetime, where there are
other women who have felt that way before they get cancer and it just adds to it. I have had
partners that have not cared or not been grossed out. To be honest for my own sense of
confidence I wear a bra if I am having sex. It gives me an illusion that everything is normal.
I can look down and be, like, right, that’s what it looks like. It hasn’t affected me too much,
but I do think it has an impact on a lot of people.
Recently, at the age of thirty-four, Katie went into menopause and realized that she won’t
be able to have children anymore, which she admits affects her sense of femininity: “I
know that having children does not make or break a woman, but sometimes it just feels
unfair that I never got the opportunity all because of a 1.7 cm tumor. For being so small,
it really upended my life.”
Katie has been cancer-free for seven years now, which technically signifies that she is
cured of the disease. As a result of her breast cancer she gained a new self and a new
happiness that she finds in a certain negation of a traditional femininity that she left
behind. She refuses the title “breast cancer survivor,” and instead prefers to think of
herself simply as a cancer survivor.
If I hadn’t gotten cancer I wouldn’t be as happy as I am now. If I hadn’t gotten cancer what
would’ve happened is that I would’ve gotten pregnant with his kid, and I would have never
come to Hopkins, never would’ve got a PhD, and I would still be living in a subdivision in
San Jose, and I would be miserable. But I don’t like to say that cancer is the best thing that
happened to me. Because cancer is never the best thing that happens to anyone. The trajec-
tory of getting cancer and then not being able to have a baby, then wanting to pursue other
things, ultimately made me a lot happier now. But also destroyed my marriage, because I
couldn’t settle for anything less than what I really wanted. After you have confronted death
it’s really hard to go back to mediocrity.
By negating the term “breast cancer survivor” Katie points to the mastectomy as gen-
dered stigma and the “femininity trap” that it produces: it forces women into the marked-
ness of the breast and doesn’t let it become a political question. S. Lochlann Jain asks the
pivotal question, Can women not show their chests in public because they are women,
or because they have breasts? (2007, 515). She bases her answer on her experience of a
mastectomy without breast reconstruction, recounting the taking off of her shirt during
a yoga class in small-town Canada and saying, “Look or don’t, I used to have another
body that you couldn’t by law look at, but now I have this body that you can, because its
breasts have been taken off and in that place remains a flat space that is sort of coded
male but really is very different, and when I take off my shirt you can see that, and
anyway, why should males get to hoard masculinity and shirtlessness to themselves?”
(516). Jain elaborates on what it means to have breast cancer as a gay woman, pointing
to the fact that there is no subject position available for cancer butch: “[T]he public
coding of breast cancer provides a strange inter-gendered space such that the butch
woman literally cannot be tough ‘battling’ cancer, and still maintain a gender identity
as butch” (521).
Jain is right in that the “adopted masculinity” through the experience of breast cancer
is equally feminized, in that it is a negation of femininity and not its own subject posi-
tion. (See the semiotic square of breast cancer that follows the next case study.)
3 94 • BERNADETTE WEGENSTEIN
figure 21.5
Shelia Westry during a prayer the night
before her mastectomy on May 24, 2012.
Shelia Westry was fifty-two when she was diagnosed with stage IV triple negative breast
cancer on November 11, 2011. Her right breast contained a 17 cm tumor, and she also had
regionally advanced breast cancer. Because of this late discovery, Shelia had poor response
to induction chemotherapy. Shelia was a religious person before her diagnosis, but she
faced her mortality with a renewed and strengthened faith in the midst of her caring
family. Breast cancer runs in Shelia’s family: her mom died of it, and several aunts. The
night before her mastectomy the family gathered to talk about the past and the future.
The younger family members were scared. Pastor Parker uttered a special prayer for
Shelia’s upcoming mastectomy, but clarified that only the Lord would decide if Shelia
was to survive or not. The family members referred to Shelia as a saint. But she countered
with modesty: “A saint is someone who walks with Jesus. I am not saint. I wish I was.”
T H E S E M I OT I C S Q U A R E O F B R E A S T C A N C E R
The semiotic square was introduced by Algirdas J. Greimas (1966) to interpret semiotic
signs through the opposition of concepts. In the case of breast cancer, it helps us see the
apparently paradoxical promise that breast cancer holds for some of its victims: not exclu-
sively a threat of death, but also the possibility of escape from a prison constructed by the
desires of others. (See figure 21.6.) The myth of Saint Agatha is, in many ways, the primal
exploration of this paradoxical relation between femininity, death, and freedom through
the excision of the very symbol of femininity and, indeed, of life itself. By equating the bad
breast of cancer with constraints of a variety of kinds, the choice to mastectomize and
replace that breast with one of one’s own making becomes like Agatha’s choice to render
up her own breasts rather than give up her virtue. Thus it turns into an ultimate demon-
stration of kalokagathia, of the good that real beauty—beauty that is more than skin-deep—
should always hold. When one of the subjects of The Good Breast was asked what was more
important to her in the reconstruction of her breast—her life or the breast itself?—she
answered immediately that it was her breast. The fixation on the breast is what drives our
culture. Cosmetic surgery, cancer rallies, and domestic ethnographies are only the effects
of this fixation. But in order to understand cosmetic surgery, we need to understand the
body parts that demand the change.
N OT E S
1. I began developing the documentary The Good Breast in 2011, shooting a total of
approximately five hundred hours through 2015. The independently funded film was produced
by Jon Reiss and coproduced by Rebecca Messner, edited by Victor Livingston, and produced
and directed by Bernadette Wegenstein. It will be released in Fall 2015.
2. The American Society for Aesthetic Plastic Surgery (ASAPS), “Cosmetic Procedures Increase
in 2012,” http://www.surgery.org/media/news-releases/cosmetic-procedures-increase-in-2012.
3. The National Cancer Institute estimated that 232,340 women would be diagnosed with
breast cancer in 2013. See SEER n.d.
4. Klein’s theory is important because it describes women’s ability to contribute to culture
in a primal and not secondary sense. This is unlike that of Freud, for whom the “riddle of the
3 96 • BERNADETTE WEGENSTEIN
nature of femininity” was “reduced to a function and functioning whose historic causes must
be reconsidered: property systems, philosophical, mythological, or religious systems—the
theory and practice of psychoanalysis itself—all continually, even today, prescribe and define
that destiny laid down for women’s sexuality” (Irigaray 1985, 129).
5. It is likely that these two stories are a pagan and a Christianized version of the same
story.
6. These are oral tales by the people of Catania.
7. The dialogue here represents my own translation from the Italian of the hagiographic
acts of Agatha’s martyrdom. See “Il Martirio” 2011.
8. I would like to thank my entire production team for their efforts in helping me bring
my theoretical ideas onto the screen in the shape of a cinema verité essay film.
9. I would like to thank my editor, Victor Livingston, for his help in articulating the story
of breast cancer and martyrdom in relation to my characters.
10. All patient-characters in The Good Breast signed HIPAA privacy agreements to disclose
their health information in the context of this study. This patient story, however, was not
included in the feature documentary but only in the form of an individual webisode.
11. See the recent debate on whether or not to call DCIS (ductal carcinoma in situ) cancer
at all, because of the recommendation from a working group at the National Cancer Institute
published in the Journal of the American Medical Association, discussed by Tara Parker-Pope in
the New York Times blog on July 29, 2013 (http://well.blogs.nytimes.com/2013/07/29/report-
suggests-sweeping-changes-to-cancer-detection-and-treatment/?_r = 0).
12. http://www.vice.com/read/breast-cancer-survivors-find-the-michelangelo-of-nipple-
tattoos.
13. I met Katie when I was doing my research on breast cancer, outside the breast clinic
where I filmed The Good Breast.
14. A KI-67 proliferation index over 35% is considered high, and Katie’s was 95%.
15. The original interview was conducted by my research assistant and student Komal
Kumar on November 17, 2011, and followed up by me on September 6, 2013.
REFERENCES
Blum, Virginia. 2005. Flesh Wounds: The Culture of Cosmetic Surgery. Berkeley: University of
California Press.
Bradley, J. C., M.D. 1852. “The Reciprocal Agencies of Mind and Matter.” In A Collection of Papers
on the Subjects of Medicine, Surgery, and the Collateral Sciences. New York: Struyer & Townsend.
Ehrenreich, Barbara. 2001. “Welcome to Cancerland.” Harper’s Magazine, November. http://
barbaraehrenreich.com/website/cancerland.htm.
———. 2009. Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined
America. New York: Metropolitan.
Greimas, Algirdas J. 1966. Sémantique structural: Recherche de méthode. Paris: Larousse.
Irigaray, Luce. 1985. Speculum of the Other Woman. Translated by Gillian C. Gill. Ithaca, NY:
Cornell University Press.
Jain, S. Lochlann. 2007. “Cancer Butch.” Cultural Anthropology 22 (4): 501–38.
Jones, Meredith. 2008. Skintight: An Anatomy of Cosmetic Surgery. Oxford: Berg.
3 98 • BERNADETTE WEGENSTEIN
22
ATTACHMENTS OF LIFE
Intimacy, Genital Injury, and the Flesh of the U.S. Soldier Body
Zoë H. Wool
T H E R E P R O D U C T I V E C A PA C I T Y O F T H E U . S . S O L D I E R B O DY
The value of American soldierly life is exceptional and ambivalent, forged at the melting
point between the sacred, the sovereign, and the imminently killable (MacLeish 2013,
12). While soldiers’ lives are often considered in terms of death and material destruction,
their bodies have also long been bound to the reproduction of life in normatively gendered
and nationally valued forms (Canaday 2009; Linker 2011; see also Mosse 1998, 1990).
Across this uneven field of valuation, the bodies of injured soldiers have emerged as
uniquely compensable among forms of American life (Linker 2011).1
Though the stereotype of the war-crazed U.S. veteran endures against a background
of Vietnam-era scandals of neglect and mistreatment, today the grievously war-injured
soldier body is treated as both virtuous and valuable (cf. Lambek 2008)—a living and
iconically male body marked by his closest encounter with that “ultimate sacrifice” of
war: death. And yet, in the presence of such exceptionally worthy fleshy forms, the ellip-
tical proposition of “better off dead . . .” springs eternal; contemporary American sol-
dierly life does not escape those normative arrangements of flesh that qualify a body for
worthy life under liberal regimes of bio- and necropolitics. Under such regimes, worthy
life is vested in a full, rights-bearing personhood that entails, among other things, par-
ticular alignments of flesh, gender, sexuality, and dependencies and attachments legible
as chosen by, and capacitating of, rational, agentive, self-sufficient, and individuated
human beings.2 These alignments are understood to qualify a body for a life worth living,
399
even in the case of war-injured American soldiers whose bodies are, arguably now more
than ever, imbued with the highest national value.
Drawing on ethnographic fieldwork with such injured soldiers in 2007–8 at Walter
Reed Army Medical Center, the flagship of American military medicine, my effort here
is to trace how gender, sexuality, and life worth living get nested within each other and
routed through soldiers’ actual flesh. I do this by thinking about and around genital
injury, situating the remaking of life and limb at Walter Reed within a perennial concern
that soldiers with genital injuries might indeed be better off dead.3 Within a liberal logic
that collapses gender, sexuality, and the worth of life into specified forms of individuated
human bodies, the living body of the grievously injured American soldier thus presents
a particular problem: a figure of exceptionally worthy heteronational citizenship and
iconic masculinity captured in an emasculated and “invalidated” form (Hughes 2000).
I understand this concern with soldiers’ lives and genital injuries as one that reso-
nates with many other forms of flesh and forms of life.4 The ethnographic effort at hand
thus moves us away from the soldiers’ bodies in themselves—as if they contained prob-
lems of gender, sexuality, and life itself within the limits of their own flesh—and toward
a broader fleshy puzzling of gender, sexuality, and life through and across multiple bod-
ies and their forms of attachment, arrangements of flesh, modes of touch, and the
regimes of intimacy that coordinate them.
T H E R E M A K I N G O F L I F E AT WA LT E R R E E D
Since it opened its doors in 1909, Walter Reed has been bound to the frictions of soldier
carnality, even as they shift across eras of American war making. Mere miles from the
White House, it is both a public staging ground for careful and historic displays of injured
soldier bodies and a zone of life within which injured soldiers’ precarious lives are stabi-
lized and remade.5 During times of war, it becomes a space in which national anxieties
about value and virtue are publicly dramatized and intimately born in the bodies of injured
soldiers, and where the exposed lives of soldiers must be shored up and supplemented
by medical technologies, national symbolic and material investments, and corporeal
attachments.
First designated for the treatment of combat-injured soldiers during World War I, it
quickly became the place where the moral and political promise of postwar rehabilitation
would be publicly fulfilled: where, as historian Beth Linker (2011) has shown, injured
soldiers could be remade into socially reproductive men, thereby repurposing what
would otherwise have been war’s insufferable waste. Normative forms of productive
masculinity have thus been key to American rehabilitation since its very beginnings.6 In
the shadow of the corrupt Civil War pension system, an early emphasis of rehabilitation
was cultivating financial independence, re-forming injured bodies into wage-earning
men (Linker 2011). By the aftermath of World War II, turning these wage-earning men
into proper husbands and fathers by working on the sexual and reproductive capacities
ATTACHMENTS OF LIFE • 40 1
pain. He diligently tried various therapeutic techniques offered, but after a round of
aquatic therapy brought no improvement he began lobbying for an amputation. About a
year and half into his stay at Walter Reed, he finally got it. He would spend another year
and half there, three years and twenty surgeries in total, and along the way he got mar-
ried, was dad to one child of a different father, fathered one child of his own, struggled
with depression, and witnessed the degeneration of his marriage, which culminated in
an agonized separation after his wife hit him during an argument a few months after his
amputation.
Though, like Jake, injured soldiers were likely to be in and out of the hospital for
scores of surgeries throughout their time at Walter Reed, there was generally a period of
weeks of intensive inpatient care, when their bodies were too open or too fragile for
soldiers to venture too far from the hospital bed, and then many months stretching into
years of outpatient medical and therapeutic intervention through which the body was
stabilized in its new form. As outpatients, soldiers lived for months or years with their
NMAs, and sometimes their own young kids, mostly in one of the two hundred rooms
of the on-post Mologne House Hotel, others in the nineteen rooms of the nonprofit com-
munal family-style Fisher House.
Although soldiers and NMAs spent much of the first half of each day in physical
therapy or at other appointments in the hospital, daily life at Walter Reed unfolded with
remarkable boredom largely beyond such obviously institutional spaces. Soldiers killed
time smoking on patios, watching movies or playing video games, breaking up the intrac-
table days with trips to the mall or nights at the bar or special events intended to honor
“Wounded Warriors.” It was across all these spaces that soldiers spent years engaged in
an effort of remaking life not at all captured by the term rehabilitation.
Throughout all of this, Non-Medical Attendants were “attending,” for example, to
wound care, toileting, medications, making and keeping hospital appointments, and
staying on top of endless amounts of paperwork. But NMAs were also fiancées or wives,
or parents, cousins, or best friends, obligated by kinship and love to the bodies of their
most significant others (Wool and Messinger 2012). They enervated Walter Reed’s insti-
tutional space with the nervous conditions of domestic dramas, and life there was made
as an uncanny simulacrum of the normative domesticity soldiers were supposed to be
rehabilitating toward. Though American postwar rehabilitation was always about remak-
ing men, it never looked quite like this, with flesh being rendered sufficient for life by
ideally securing it within that “thinnest embrace of the conjugal couple” (Povinelli 2006,
46)—a relation that amounts to much more than a pair of socially valued gender roles
called by the names husband and wife.
Elizabeth Povinelli elaborates the conjugal couple as an intimate political relation of
liberalism in which two gendered bodies become sexually oriented toward each other;
through the force of “true love” that brings their bodies into impassioned and regulated
contact and proximity, each may be made as a properly enfleshed liberal individual (Pov-
inelli 2006, 175–236). The conjugal couple, rather than the group (Povinelli 2006,
ATTACHMENTS OF LIFE • 40 3
infection in one stump and that just as he was thinking “What the fuck can go wrong
now?” he started urinating blood. This was attributed to an interaction among some of
the many medications he was on. He said they kept him on Viagra and switched his
antidepressants from Prozac to Zoloft, but he was still urinating blood.
Peter, a nineteen-year-old reservist, stepped on an IED shortly after arriving for his
first tour in Iraq. He said he’d been lucky to be wearing his skirt that day. The skirt is a
removable piece of Kevlar armor that attaches to the vest or SAPI (small arms protective
insert) plates protecting the torso, hanging down in front to protect the genitals and
proximal arteries. It was cumbersome, and given the extra eighty to one hundred pounds
that armor and gear added to a soldier’s frame, shedding weight was certainly welcome.
But as I listened to Peter and another soldier discuss why soldiers didn’t want to—and
sometimes didn’t—wear the skirt, neither weight nor agility was a sufficient explanation.
These deliberations hinged on the gruesome irony that soldiers considered the skirt
emasculating.
Jake, like many soldiers at Walter Reed, had an injury story with which to responded
to the question “What happened?” that was often asked by the endless stream of grateful
strangers who passed through. As a genre, such stories were pithy, gruesome, brief, and
laced with gallows humor. They included details about what pieces of hot metal pene-
trated a soldier’s flesh in what spot, and how many procedures of which kinds a soldier
had since been subjected to, counting surgeries, or pints of blood products received, or
the seconds or minutes of technical death the soldier survived. Like all of them, Jake’s
story omitted much, like the fact that he had been on fire as he scrambled out of his
blown-up vehicle, but he always made sure to joke that “a piece shrapnel came milli-
meters away from making me a eunuch.”
Discernable across such practices and logics is a fleshy linchpin of love and life: a
correspondence of soldierhood, manhood, personhood, and genitals that exerts its pres-
sures within the late liberal “empire of love” (Povinelli 2006). Time and again, as eras of
war making unfold through varying structures of feeling and contours of normative
intimacy, this correspondence is rendered as if it were a straightforward equivalence; as
if the form and function of a soldier’s genitals were, in themselves, the contours of his
manhood and the worth of his living on.
T H E U . S . S O L D I E R ’ S P U B L I C S E X U A L A N ATO M Y
During the protracted closing years of the American war in Vietnam, vociferously antiwar
senator and soon-to-be Democratic presidential candidate George McGovern stood on
the floor of Congress and declared: “In one sense this chamber literally reeks of blood.
Every senator here is partly responsible for that human wreckage at Walter Reed and all
across this land—young boys without legs, without arms, or genitals, or faces, or hopes.”
The speech was excerpted the following day on the front page of the New York Times
and circulated widely and rapidly. It was celebrated by the political left as an impassioned
ATTACHMENTS OF LIFE • 40 5
The “team of doctors” Wood refers to is the army’s Dismounted Complex Blast Injury
Task Force sent to investigate blast injuries sustained on foot patrols, which were increas-
ingly common in Afghanistan.11 The task force report refers to do-not-resuscitate pacts
only in its introduction, in which it explains the need for the report. It also specifies that
its evidence for these pacts is only anecdotal (Dismounted Complex Blast Injury Task
Force 2011, 1). At a press briefing, the task force clarified that it had no other evidence of
anyone actually entering into such death pacts, nor did it imagine that medics or corps-
men ever would (Dao 2011). All the same, the task force chair, Brig. Gen. Joseph Cara-
valho Jr., said he found the rumors not only “concerning,” but entirely “plausible” (Dao
2011).12
Rather than gasp at the “obvious” meaning of male soldiers’ genital injuries, I want
to trace how the worth of life gets woven into the sexual anatomy of a soldier in such a
way that liberal modes of recognition can read such symbolically and politically vested
bodies as “human wreckage,” as lives that might be logically treated as better off dead.
Thinking of Jake, for example, we might ask how soldiers’ bodies are configured such
that grateful strangers can reasonably request from them stories about what exactly has
happened to their flesh and why, in this context, it is taken as reasonable for Jake to reply
with a joke about the physical margin that separated his currently intact genitals from
the possibility of castration.
I suggest that the correspondence between soldiers’ genitals, masculinity, and life
itself is not a straightforward equivalence and that the remaking of life under way at
Walter Reed is both sensitive to, and not the same as, that common sense. Tracing it
ethnographically entails an extension of gender, sexuality, and life worth living through
and across the contours of multiple forms of flesh as they are configured in and for con-
jugal couplehood. Consequently, my ethnographic attention to “manhood” is not an
attention to the condition of a social body in itself, but to intimate attachments and
regimes of touch through which properly gendered life and self-sufficient personhood
are made and on which they are seen to depend in the case of American soldiers.
H E T E R O N AT I O N A L AT TA C H M E N T S A N D T H E S E C U R I N G O F L I F E
In the rehabilitative context of Walter Reed, the social skins of injured soldiers are being
carefully calibrated to sustain life: thick enough to ward off infection and not require
others’ constant care, but not so thick, as it sometimes threatens to be in military life, as
to preclude the configuration of dependencies that constitute appropriately intimate
attachments: a properly rehabilitated soldier body should be able to live alone, so that he
can find love and won’t have to. Though solitary injured soldiers involved in feats of
athleticism can index heroic self-sufficiency (Linker 2010; Serlin 2006, 173–75)—a mili-
tary subgenre of the “supercrip”—in the absence of such ostentatious vitality and amid
increasing concern about unprecedented rates of soldier suicide (seen as a problem of
risk and withdrawal), the solitary body of the injured soldier suggests a comorbidity
ATTACHMENTS OF LIFE • 40 7
two betrayed girlfriends from back home. He finally reconciles with one, Sharon—a
model and high-school senior. In the summer, she agrees to move in to Walter Reed and
takes over from Peter’s parents as his NMA.
Peter and Sharon fought almost incessantly. She was controlling and jealous to the
point of paranoia. Other wives and girlfriends at the Fisher House found her gossipy,
even crazy. She burdened Peter’s life with melodrama. Even simple social plans involved
elaborate negotiations. And Peter worked hard to keep the relationship going, sometimes
by appeasing her and sometimes by egging her on. Out of this, a degree of violence
developed. One afternoon, Peter admitted to breaking his prosthetic limb when he threw
it at a wall during a fight. When I suggested this was abusive, he responded, “That’s not
abuse. Abuse is when you push the thing I’m leaning on out from under me,” which
Sharon had done at least once.
Doing all he did to keep Sharon appeased enough to stay was about more than not
wanting to be around his parents. But it was not so simple as opting for some unfettered
independence and freedom of manhood made possible by having a girlfriend, rather
than parents, as his most intimate kin. After all, the strictures Sharon placed on Peter,
and with which he reckoned to keep her present, were both tighter and more precarious
than any rules from his concerned parents. So he could not be radically independent and
self-determining with Sharon; but radical independence and self-determination were not
really the point. There are always dependencies; it is the character of their distribution
that makes the difference.
In his earliest days at Walter Reed, the caring touch of his parents threatened to make
Peter’s flesh into the body of a child—“helpless” and desexualized. He was reluctant to
be done for by them, preferring to do for himself—to climb the stairs alone, to try to keep
his own body clean and his stitches dry, even though in doing so he risked damaging his
flesh. Adulthood thus emerged as a vital entailment of Peter’s future, masculinized life
routed through the sexual capacities of his body. But this manhood is not just about the
contours or integrity of his flesh; it is a property of the intimate attachments through
which his flesh is conditioned, couplehood over childhood, regardless of whether they
make his flesh more or less whole. They are for the better if they make his social skin
appropriately thin, even if they make the condition of his life more precarious.
In fleshy contact with Sharon, shove and caress alike, Peter’s body becomes more like
the kind that can sustain the life he feels is worth so much. When his flesh is exposed or
vulnerable to hers, conjugal couplehood is more readily inhabitable. And though their
relationship did not last the length of his time at Walter Reed, it lasted as long as it did
in no small part because of how it limned that life. After Sharon, Peter found a steadier
girlfriend, and when it was time for him to leave, they moved in together in an apartment
in Washington, D.C.
The intensities of life at Walter Reed—the close quarters and publicity, the precarity so
profound it cut right to and through the body itself—strained life-making attachments, and
re-formed vital intimacies. Arrangements more ideal than Peter and Sharon’s, attachments
ATTACHMENTS OF LIFE • 40 9
at the Fisher House, Erin got mad. “When were you masturbating?” she demanded, and
his unperturbed reply was “I don’t know, the other day.” Erin took offense both at the fact
that he was touching his own body in this solitary way, without her touch and without her
knowledge, and at the implication that he might not be satisfied with the sex they were
having. To this, James responded not with recourse to his own flesh and desire, not to his
“manly” sex drive, but to their mutual heteronormative conjugal pleasure: he said the
more he masturbated, the better their sex would be for them both, reasoning that he
would be able to sustain intercourse without ejaculation for Erin’s presumed pleasure and
better know his own desires.
In such a moment, his potentially excessively self-sufficient touch becomes part of the
proper, securing heterosexualization of his unstable flesh as it is made to fortify his inti-
mate attachment to Erin. But this carnal anchor was not always fixed so fast, and in its
absence, the condition and conditioning of the body was seen to have so transformed the
nature of touch that freely and mutually chosen dependencies once called love now seemed
like proof of unfree obligation, no longer the stuff of properly configured liberal persons.
Erin told me that there was a time, just after James became an outpatient, when he
wouldn’t get out of bed for days on end, not eating, not getting up to go to the bathroom,
and hardly talking at all. Erin took over the basic maintenance of his body as best she
could—changing his catheter, keeping his wounds clean—but her touch of his exposed
body was changing from an enactment of true love to an obligatory kind of care that was
opposed to conjugal couplehood. She said that when she couldn’t take it anymore, when
she had reached the limit of her capacity for this obligation to maintain nothing but
James’s life, she went to the bathroom, got a cup of water and a toothbrush, and brought
them to him. She demanded that he brush his teeth; otherwise, she would stop kissing
him. She offered this as an ultimatum, a final choice between a kind of caring contact
that might still be tinged with unfree obligation but that at least held the promise of
conjugal couplehood, and, on the other hand, a kind of abandonment compelled by
obligated and desexualized flesh that therefore had nothing to promise for the future. By
Erin’s account, imperiling their sexual contact was a turning point in James’s rehabilita-
tion. It was from this last resort to their intimate attachment, anchored once more in
properly conjugal touch, that James reemerged as a viable person.
This foundational attachment also brought risks, risks that were not the same as those
wagered by Peter and Sharon, whose lives and flesh were not bound by love with the
same intensity, not previously and properly made through the domestic arrangements of
conjugal couplehood.
On separate occasions, without the other present, James and Erin each told me about
their reunion at Walter Reed. It was in James’s hospital room, the first time they had seen
each other after his injury. In both versions of the story, James is described as in pain and
heavily medicated. And in both versions of the story the first thing he wanted to do when
he saw Erin was have sex, begging her to close the door and get into the hospital bed with
him. It was a common enough story at Walter Reed.
4 10 • ZOË H. WOOL
In his telling, James was proud of his desire; there was a continuity of personhood in
it, a kind of self—an enfleshed self bound to Erin—that seemed to have weathered com-
bat well, despite his being blown up by an IED. Not only was his heteronormative sexual
desire intact in his body, but Erin was there, at his bedside, close enough to touch. While
James’s desire may have been about lust, it was also about being constituted as a suffi-
cient individual, desirous and desiring, through the attachments of the conjugal couple;
it was about living on as a husband and a father, and all the material and fleshy dimen-
sions of past and future livelihood that that represented.
But in her telling, Erin described confusion, concern, and disgust. When he asked her to
get into his hospital bed, she saw the condition of his flesh, the clinical ways it was attached,
and was concerned for its precarity; it did not seem to her able to survive sex or sustain inti-
mate attachments. And she was disgusted by the thought of such contact with this unfamil-
iar arrangement of flesh, which to her did not seem entirely recognizable as the person to
whom her life was bound. Though at the time she kept those feelings to herself, she resisted
sexual contact, giving instead strained and otherwise obligated kinds of caring touch.
Then one night, as we sit around the TV with a group of other injured soldiers and their
wives, the conversation turns to the urgency of these soldiers’ medical needs. Erin begins
describing James as the inpatient he had been when she arrived at Walter Reed—that time
about which their memories and feelings seem to be so separate. As she speaks, James is
sitting on the plush wall-to-wall carpet of the living-room floor. He has taken off both of his
prostheses and one of his snugly fit liners, which sits on the coffee table. Though not uncom-
mon, this is a posture of both comfort and exposure, a physical arrangement of James’s limbs
that acquiesces to injury and to certain queer mobilities (like scooting across the floor) rather
than aspiring to normative ones (be they passing with prosthetic limbs or zipping with ath-
letic agility in a lightweight titanium wheelchair). And so it is especially painful when, refer-
ring to the large, padded, high-backed wheelchair with a headrest that is sometimes used for
soldiers in the earliest days after their arrival at Walter Reed, when they have the least bodily
strength or control and require the most physical support, Erin says James had been “just
sitting there in his retard chair.” From his position on the floor, James says, “Thanks a lot,”
his tone sarcastic but tinged with anger. “Sorry, but seriously . . .,” Erin replies, and gives a
ghoulish description of James in his hospital room, overmedicated and drooling. James just
turns, silent and hurt and sad and put in his place, and stares down the hall.
Thinking of James’s description of himself in that hospital room, of his hopeful het-
eronormative sexual desire, and of the way that conjugal couplehood seemed to be the
only form of intimate attachment through which properly rehabilitated life could be
secured at Walter Reed, this moment seemed to expose with particular clarity the vulner-
ability of life that soldiers and wives forge and navigate in remaking it, those “ties or
bonds that compose us” (Butler 2004, 20, 22), and so may be our undoing; the fleshy
and intimate attachments that may put lives at loose ends. This is how the intimate
attachments of conjugal couplehood matter as they ward off solitude, calibrate the skin,
and gesture toward a viable future.
ATTACHMENTS OF LIFE • 41 1
CONCLUSION
When soldiers are injured in war, their injuries may both amplify and impugn their
special reproductivity, searing a question mark into the iconicity of their heteronationally
reproductive bodies and rendering them in newly questionable forms. In this body, all
sorts of transparent and buttressing tensions secreted within the universalism of late
liberal life become rather suddenly visible. In this, the figure of the injured soldier keeps
strange company with the worthy and unworthy poor, the juridically incapacitated adult,
the companionable animal, and those many proliferating particularities of rights to life
and death—from abortion to euthanasia to the death penalty to “wrongful birth.”
In the contemporary United States, injured soldiers occasion this “mirage of univer-
sality” (Berlant 2002, 144) to writhe and flicker with a particular intensity. They body
forth exceptional citizenship and institutionally produced and supported forms of abjec-
tion that coincide with a patriotic embrace. Theirs is a habilitation of supermasculinity
built on disability and erected in the service of nothing more than a heteronational
domestic good life. Neither an ideally flat liberal person nor a necropolitically flattened
body edged toward bare life, the figure of the injured soldier is aspirationally normative
and unwillingly queer, and these features are folded into the contours of actual injured
soldiers’ lives through regimes of intimate touch.
Manhood, in its fleshiest sense, becomes the apotheosis of rehabilitation at Walter
Reed because it seems to produce liberal persons, persons who must, as a condition of
their “self-sufficient” personhood in this historical and political moment, at least have
bodies that are properly sexed even if they are not properly limbed and who can be made
whole through intimate attachments. Masculinity thus appears in the equation not as a
quality of the body but as a quality of the specific and sexualizing orientations, modes of
touch, and distributions of dependency that span intimately attached forms of human
flesh and render them sufficient for valued, politically legible, heteronormative life. The
young male soldier’s limbs, genitals, and supplements—from prosthetic limbs to Via-
gra—constitute the sufficiency of his personhood in relation to significant others and to
gendered material arrangements of domesticity and dependence.
Life then can sometimes be made to be about genitals, but never in their mere
presence or absence or fleshy condition, and never merely because of their symbolic
significance. The worth of a soldier’s life becomes hinged to the form and function of
genitals always and only insofar as they are made the fleshy anchor for the attachments
that are supposed to both secure the body and delimit the contours of the good life
after war.
N OT E S
Many thanks to Veena Das and Clara Han for their invaluable comments on an earlier draft
of this chapter. I must also thank the participants in the 2011 Gender Studies Research Round-
table at Whitman College and the Intimacies of War workshop at the University of Colorado,
4 12 • ZOË H. WOOL
Boulder, as well as members of the departments of anthropology at the University of Toronto
and Rice University, for their thoughts on other iterations of the arguments I make here.
1. The history of this emergence is not as natural as one might assume given the seemingly
timeless sacralization of soldiers in the United States today. On the stormy political history of
compensation for U.S. veterans, see Frydl 2009 and Skocpol 1995.
2. An elaboration of this form of personhood is far beyond my present scope (see, inter alia,
Balibar 2012; Berlant 1997; Brown 1995; Davis 2002a; Povinelli 2011), but I note that I include
here personhood that takes shape within the political and social ethics of “care” (Kittay 1999)
and “capabilities” (Nussbaum 2007; Sen 1992)—two recent approaches to the liberal problem
with and of debility.
3. This perennial concern echoes Foucault’s succinct observation that the modern deploy-
ment of sexuality has created an arrangement of life in which “sex is worth dying for” (Foucault
[1979] 1990, 156).
4. The most immediately relevant examples are those arising from disability, and abject-
edly queer and transgendered forms of life (e.g., Haritaworn, Kuntsman, and Posocco 2013;
McRuer 2006a; Puar 2007).
5. Though recently moved from its original location in Washington, D.C., to nearby
Bethesda, Maryland, it remains a short drive from the capital, and its name and wartime
significance endure.
6. During World War I, these were also racially multiplied (Lawrie 2014).
7. With the claims to same-sex entitlements of normative intimacy that have followed the
repeal of Don’t Ask Don’t Tell, it seems we can now add homonormativity (Duggan 2002) and
homonationalism (Puar 2007) to heteronationalism here. (See Jennifer Hlad, “Same-Sex Spouse
Not Allowed to Join Group at Ft. Bragg,” Stars and Stripes, December 12, 2012; Rachel L. Swarns,
“Military Rules Leave Gay Spouses Out in Cold,” New York Times, January 19, 2013, A1.)
8. Interestingly, TBI had been displacing posttraumatic stress disorder (PTSD) on this
score. For more on PTSD in the context of Iraq and Afghanistan veterans, see Finley 2011.
9. The remark was made on September 1, 1970, following the (expected) defeat of the
McGovern–Hatfield Amendment, which would have set a deadline for the withdrawal of U.S.
troops from Vietnam, effectively ending the war. The quotation above was included in the page 1
New York Times story about the amendment the next day (Robert Smith, “Senate Defeats ‘End
War’ Move by Vote of 55–39,” New York Times, September 2, 1970). On the occasion of McGovern’s
death on October 21, 2012, it was also cited in a number of obituaries and remembrances—from
Fox News (Pergram 2012) to Al Jazeera (Rosenberg 2012). That its profoundly ableist meaning
has not been acknowledged by the political left that celebrates it speaks to the varied necropolitical
organization of disabled bodies and injured soldier bodies, even though the flesh of these different
bodies can be isomorphic and even though the shared dimensions of their experiences were, in
the very moment of McGovern’s speech, being made the ground of a political alliance instrumen-
tal in the eventual passing of the Americans with Disabilities Act (ADA) (see Shapiro 1994).
10. This emphasis on normative genitals and reproductive sex (among still typically straight,
male injured soldiers) is more pronounced than during the Vietnam War, which coincided with
the public proliferation of diverse sexual practices and emphases on bodily pleasure and alterna-
tive social forms. That’s not to suggest that alternative sexual practices were part of Vietnam-era
rehabilitation; indeed, there was then a greater lack of institutional attention to injured soldiers’
ATTACHMENTS OF LIFE • 41 3
social and sexual lives altogether. But due in part to the absence of such institutional attention,
some nonnormative social, political, and sexual formations arose in that era that are less pos-
sible today. These included the alliance of Vietnam vets and disability activists—something
virtually absent from contemporary veteran politics—and a cultural emphasis on modes of
sexual pleasure among injured vets that, while not less tied to compulsory heterosexuality, were
often less squarely configured within heteronormative logics of domesticity and reproductive
futurism. (See, for example, Hal Ashby’s 1978 film Coming Home.)
11. This is distinguished from the Iraq War, when soldiers would more often be blown up
while inside vehicles. The report defines a dismounted complex blast injury (DCBI) as “an
explosion-induced battle injury (BI) sustained by a warfighter [sic] on foot patrol that produces
a specific pattern of wounds. In particular, it involves traumatic amputation of at least one leg,
a minimum of severe injury to another extremity, and pelvic, abdominal, or urogenital wound-
ing.” (Dismounted Complex Blast Injury Task Force 2011, i). The report focuses on multiple-limb
amputation and genital injury.
12. An AP report, in reporting the words of a navy surgeon, significantly complicates the
idea of such a pact: “ ‘It is a conversation . . . that every Marine has with his corpsman, the buddy
who is first to treat him if he is wounded by an insurgent’s bomb. The Marine says, “If I lose
my manhood, then I don’t want to live through it.” . . . They ask us not to save them if their
“junk” gets blown off,’ said [Lt. Richard] Whitehead. . . . ‘Usually, we laugh. We joke with them
about it. At the same time, you know that you’re going to treat them anyway’ ” (Torchia 2011).
13. A notable example is images of solitary soldiers used to powerful effect by Washington
Post photographer Michelle duCille as part of the paper’s Pulitzer Prize–winning exposé about
the plight of injured soldiers at Walter Reed. The Pulitzer citation includes ten stories and
accompanying images, as well as two additional slide shows of duCille’s photographs. The
most notorious was of Specialist Jeremy Duncan in his mold-infested room, illustrating the
overall problem of neglect and its cycle of abandonment and withdrawal. There is also an
image of Specialist Josh Calloway sitting alone on the bed of his darkened room, head in hands,
conveying his struggle with psychiatric problems and the psychiatric care he had been sent to
Walter Reed to receive (www.pulitzer.org/archives/7824).
14. One of the most-discussed images of an injured soldier was the 2006 wedding portrait
of twenty-four-year-old marine Ty Ziegel, whose body and face had been severely burned by a
car bomb in Iraq in 2004, and his twenty-one-year-old fiancée, Renée. The photo was taken
by Nina Berman for the People magazine story “Coming Home: A Love Story” (Kramer and
Jerome 2006). It went on to win the World Press Photo award for portraiture and was exhib-
ited in the 2010 biennial at the Whitey Museum. While public interpretations of the photo’s
pro- or antiwar implications ranged widely, both interpretations consistently drew on the
heteronormative futurity that structured the narrative of the image itself. The couple divorced
in 2008, and Ty Ziegel died on December 26, 2012, after collapsing on the ice outside a bar
near Peoria, Illinois (Truesdell 2013). Less spectacular images of injured soldiers and their
wives, fiancées, or committed girlfriends also circulate widely (e.g. Solider Walks Down Aisle
Buoyed by Love, Science [Broadway 2004]; Healing, with New Limbs, Fragile Dreams [Macur
2006]; and Platon’s portrait of Sgt. Tim Johannsen and his wife, Jacquelyne Kay, for the New
Yorker’s online “Service” profile (New Yorker, September 29, 2008; www.newyorker.com
/online/2008/09/29/slideshow_080929_platon#ixzz2FoAehYIS).
4 14 • ZOË H. WOOL
15. On infantilization and disability more generally, see Kumari Campbell 2008, 152–54;
and Thomas 2007, 88.
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ATTACHMENTS OF LIFE • 41 7
23
KEY ACTS
Organ Transplantation and Subjectivities in the Public Sphere
Aslıhan Sanal
İbrahim would not have a child and prayed God for a son. After long years of waiting,
his wife gave birth to a son and they called him İsmail. Yet one day, God asked him to
sacrifice his son to him to test his faith. İbrahim was torn and sad. He did not know
what to do. Finally one day he decided to take his son high up to a mountain to
sacrifice him to the God he loved and believed in. And just as he was about to kill
İsmail, God sent a lamb down from the sky so that he could sacrifice the lamb instead
of his own son. God, seeing İbrahim’s devotion to his faith, had mercy on him and
spared him his only son. And from that day on, to celebrate God’s love for İbrahim,
people sacrifice a lamb once a year and bond with God through İbrahim’s story.
Turkish transplant practices—founded upon the idea of public organ donation (organ
bağıșı), a procedure akin to the central mechanism of sacrificial donation (kurban bağıșı)
of the Abrahamic ritual sacrifice—were launched in 1975 in Ankara during the years of
terror and violence in the streets. Twenty years later, the practice had expanded to some
fourteen cities but still remained modest in size. Lack of technical and pharmaceutical
infrastructures, political disputes among transplant physicians, political instability in the
country, and social inequalities were some of the reasons for the slow expansion of the
practice. All these issues affected the public trust needed for efficient transplant practices,
since transplant practices were not a closed or “endogamic practice”1 producing the cure
within the boundaries of the biotechnological and biomedical sphere, but were instead
one with great need of public support and openness to new ideas of kinship. Only with
the public embrace of transplant technology could organs be harvested and patients be
treated. The head of a pioneering transplant unit even believed the power of religion and
the media to be on an equal footing with that of surgery to establish and maintain a suc-
cessful transplant practice.
4 18
By the end of the millennium, transplant physicians were still arguing over how to
encourage public support for organ donations. Donations from deceased donors were
still very low (10%–25% of annual transplants), while the kidney market was growing on
the outskirts of a high-tech practice that used to be praised for its idealist physicians. The
transplant community believed that increasing the number of transplants from deceased
donors would be a countermeasure against organ sale and the commodification of the
living body, yet the community failed in most cases because family members were hesi-
tant to donate their deceased loved ones’ bodies for the benefit of transplant medicine.
Extending its mistrust to public services and authorities, the Turkish public has learned
to mistrust its physicians.
Yet in 1998 there was a turn of events in favor of public donations. A young woman
who had first killed her husband and then shot herself was found almost dead at the
Istanbul airport. At the hospital she was diagnosed with brain death, and her family gave
consent to the donation of her organs. What made this consent case so different and
historic was that after physicians, together with religious authorities and the media,
invented a legend out of this suicide tragedy, public donations for transplant medicine
increased multifold for the first time in transplant history. In this chapter, I will discuss
the place of this event in the public sphere in a country where the utilization of the dead
body for medical ends has been a challenge; I will talk about how physicians deployed
individual dramas as keys in activating collectively affirmed norms and ideas of person-
hood in inventing transcendental moments in favor of technological progress. Following
on Victor Turner’s ([1961] 1981) ideas of the ritual process and symbolic action, I will try
to explore how transplants operate though cultural mechanisms in the public domain,
allowing a victim of suicide to be deployed for transplants in a heroic way.
A S U I C I D E V I C T I M A N D H E R L I F E - S AV I N G O R G A N S
After the establishment of the Turkish Republic in 1923, the country’s medical infrastruc-
ture was established as a modern public service with reputable medical schools—some
newly founded, and some taken over from the Ottoman legacy. Among the latter was
Istanbul University, where this suicide transplantation took place. Until the end of the
Cold War in 1989, public medical services remained reputable, especially if the hospital
was attached to a medical school. Also for this reason, transplants were conducted in
public hospitals only, and transplant physicians were known for their idealism in their
efforts to help patients and engage the public to ask for donations despite political insta-
bility, poverty, and social unrest. In the 1990s Turkish medicine began changing with
the breeze of Turgut Özal’s neoliberal policies. The end of the Cold War began affecting
people’s everyday engagement with public services slowly; in time, private television
channels were permitted, just like private hospitals, schools, and universities. Through-
out the 1990s there was reasonable economic growth in the country owing to these
changes. Nevertheless, the eastern regions of the country suffered from political unrest
KEY ACTS • 41 9
among Kurds and the Turkish military, unrest that had begun taking a toll on Istanbul,
which already had a population of fourteen million by the mid-1980s. Many people began
immigrating to the big city with hopes of a better future. In public hospitals such as the
reputable Istanbul University Hospital, physicians were attending more and more to
poorer patients coming from the newly emerging suburbs of Istanbul, because the phy-
sicians’ everyday lives were preconditioned by the big metropolis’s changing population
and its immediate material and emotional needs. Maybe for this reason, like their col-
leagues in other fields of medicine, transplant surgeons tried to maintain stable practices
by balancing their professional vigor with the dramas of Istanbul’s inhabitants. The
invention of the suicide drama was such an effort—almost an iconic one.
In the fall of 1997, a young woman named Ebru Esler committed suicide after killing
her husband. He had just come back from his military service. When the police arrived at
the scene, he was already dead, but she was found still breathing. After six hours of strug-
gle to keep her alive in a nearby hospital, at midnight the doctors had to tell her parents
that they were unable to save her life, that she was brain-dead (Taşdemir and Genç 1997).
Her mother gave consent for organ donation, and the body was transported to Istanbul
University Hospital, where it was delivered to the transplant unit for organ harvesting.
Moved by the circumstances and history of the event, transplant surgeons believed this to
be an opportunity to transform the image of transplants in the public sphere.
The next day, the Turkish public awoke to a media campaign announcing the increas-
ing number of dialysis patients throughout the nation—some twenty thousand at that
time—and decrying the suffering they endured. In interviews, doctors spoke about the
long waiting lists for organs and the virtues of organ donation. The minister of health
declared the woman, a victim of suicide, a heroine: in spite of having killed her husband,
she had saved many people’s lives. With the story becoming headlines in the press, doc-
tors called on everyone to fill out organ-donation cards as a legacy to their loved ones
(Altaylı 1997). The media campaign was provocative; it mobilized hundreds of people,
increasing the number of signed organ-donation cards fourfold.2 The media took up the
case and turned it into a legend.3 In a departure from the media’s prior tendency always
to bring up the “organ mafia” in every transplantation story, this time the reporting was
supportive, and transplant physicians publicly expressed their gratitude (Coşkun 1997).
In the days and months that followed, the media started focusing on the lives and
stories of the patients who had been saved by her organs. Her heart found a place in a
man in Istanbul, her liver was flown to Izmir to another man, and one of her kidneys
was given to a mother in Istanbul (Coşkun 1997). A couple of months later, the patient
who had received her transplanted liver met with four other patients who had all received
organs from cadavers donated after her suicide. They met at a hospital in Izmir and
thanked the donors in prayers. “May those who have given us life rest in peace, in light
[nur içinde yatsınlar],” they said. “We are grateful to their families” (Coşkun 1997).
The suicide drama unfolded ever so intensely in the years to come. First, six months
later, one of Ebru Esler’s friends was killed in a traffic accident in which the driver without
KEY ACTS • 42 1
into “laborious bodies” to honor them. In a major transplant unit, in the early 2000s,
suicides would constitute half of the cadaveric donor pool even though this meant few
bodies since there were so few cadaveric transplants conducted (Sanal 2011). In this sense,
the suicide act and its donation to the social body not only revealed how subjectivities have
long been construed via personhood norms, but also continued construing such identities
in modernity. It took place right at the heart of culture, where transformation could take
place through cultural processes and linguistic tools such as myths, dramas, and rites of
passage. Similarly, biomedical subjectivities are construed within culture, where language
protects and gives meaning to life. In principle, language, operating through symbols, not
only evokes but also construes meaningful continuities, reproducing the body, person-
hood, and subjectivities in the public sphere.
BURIED SYMBOL
A symbol is like a layered container of coded meanings. Beneath the surface of the word-
ing of organ donation lies buried a dominant symbol, sacrifice, celebrated through the
ritual of animal sacrifice during the festivities of Kurban bayramı (Eid al-Adha in Arabic,
also known as the Feast of the Sacrifice in English). Thus semantically, organ donation
signifies sacrificial donation (kurban bağıșı), since both words are rooted in the verb bağıș
(“donation”), which is an act conducted so that one is forgiven (bağıșlanma).
Moreover, bağıș means a donation for salvation, for forgiveness—a concept with an
undertone implying charity and exchange to restore communication with the divine.
Originally the word bağıș referred to salvation through sacrifice; for example, kurban
bağıșı is the practice of offering an animal sacrifice following the model or mythic charter
of the Qur’anic story of the sacrifice of Ismail by Ibrahim (or of Isaac by Abraham) men-
tioned in the opening. These semantic references are deeply rooted in the religious refer-
ences of collective life. Bağıș also means a charitable gift, less attached to the meaning
entailed by salvation. Yet organ bağıșı (organ donation) echoes the more traditional kur-
ban bağıșı (sacrificial offering), a sacrificial ritual in which the animal sacrifice, in parts
and pieces, is drawn into a liminal intermediary world to open a connection to the world
of the dead. During this liminal phase of communication, the deceased is remembered
in good memories. Thus transplant practices’ central expression—organ donation—is
coded under the meaning of the dominant symbol of ritual sacrifice because of an essen-
tial semantic link between the Turkish term for organ donation, organ bağıșı, and the
term for sacrificial donation, kurban bağıșı.
The ritual sacrifice’s magneticism as a religious form is evident in Muslim societies. It
allows salvation; it restores memory; it brings the living and the dead together in rituals and
festivities; it addresses uncanny dreams; it allows the living to ease the worries of the dead;
it is a metaphoric shelter upon which vow papers for good wishes are folded, tagged, and
decorated with wishful illustrations as it opens dimensions otherwise sealed. The branches
of sacrifice reach out to all to bring together the living and the dead. The processes that
KEY ACTS • 42 3
“Obligation” dominated the anthropological discourse on transplants as well. In the
United States, transplant discourse had adopted the phrase gift of life early on.5 When
Renée Fox and Judith Swazey (1992), who pioneered fieldwork among transplant
patients, wanted to understand what kind of a gift the organ was, they turned to Marcel
Mauss’s ([1924] 1954) essay The Gift, in which Mauss argued that “gift exchange” served
to reaffirm social bonds and interpersonal relationships. Giving and receiving not only
reinforced the strength of relationships among groups, but inevitably tied the exchanging
parties to the spirit of the exchanged objects; a sense of obligation to reciprocate, which
was usually beyond mere equivalence of value, governed the relationship between the
recipient and the donor.6 Fox and Swazey termed this as the “tyranny of the gift” (40)
within the transplant discourse to refer to the obligation to reciprocate, especially if the
organ donor was a family member.
While in Turkey bağıș (“charitable gift”) dominated the discourse of living related
transplants, organ harvesting from brain-dead donors entailed other kinds of tensions
related to the place of the dead body and the meaning of gift. Not only were physicians
reluctant to approach families for organ harvesting when they observed brain death, but
families were also reluctant to donate organs of their loved ones whose bodies now in
death belonged to God: bodies of the deceased could no longer be part of the economic
system of the living. To accommodate those social values, which reminded people of who
they were, the transplantation law was initially drafted in such a way that it did not oblige
physicians to report a brain death when they observed one. Organ donation and organ
harvesting, however, invoked social values that were hard to handle both for physicians
and for patients. Yet in time, because of the idealism invested in the progress of trans-
plant medicine, and with delicate discursive moves, what used to be an obligation was
felt desirable, and what used to be a constraint was welcomed as a virtuous social act—
topographically, departing from the public sphere and moving toward a soothing place
in people’s hearts. Sacrifice was operating between the two polarized states of the act of
organ donation: the technological pole representing political ideological life, and the
sensory pole representing how people were affected by it, how they made sense of it, how
they internalized it. As the semantic link between donation, suicide, and sacrifice, bağıș
seemed to reveal new meanings about the grammar of transplantation practices. Like-
wise, the suicide tragedy and its restoration into an act of kindness revealed symbolic
processes of sacrifice and their newly attained meanings for subjectivities.
P R O C E S S E S O F T R A N S F O R M AT I V E S Y M B O L I C A C T I O N
IN THE PUBLIC SPHERE
I . F O R M AT I O N O F T H E E X T E R N A L T E C H N O L O G I C A L P O L E
The first successful transplant in Turkey was a kidney transplant from a living-relative
donor conducted in 1975 by Dr. Mehmed Haberal. In 1978 Hacettepe physicians success-
fully transplanted a cadaveric kidney provided by the Eurotransplant organ-allocation
KEY ACTS • 42 5
physicians were scavengers, nor did he want to force physicians into a diagnosis they were
not confident in making. In search of a legal inspiration that would not challenge Turkish
sensibilities, Haberal turned to the regulations in the United States. It was “possible” to
transplant organs from loved ones—people who were biologically unrelated but emotion-
ally close. In order to secure a stable donor pool for transplantation, he introduced the
emotional attachment as a new category to the transplant kinship regulations in the 1980s.
This, however, would in the following years become the gray zone in which organ traffick-
ing would flourish. In public hospitals patients would bring donors along, claiming they
were emotionally attached. When the consent forms were signed, physicians would con-
duct operations. Beyond organ trafficking, the practice of transplants in public hospitals
was flourishing upon the living organ donor, and it did not even need any justification.
Physicians seemed to agree that transplants from living relatives had higher survival rates;
because of low trauma, organs would endure. But independent of this observation, doctors
had to establish their practices mainly based on living donors defined by law under three
types of relatedness. Transplants lacked the non-heart-beating brain-dead donor, as anat-
omy had lacked the cadaver donations for dissection. The technological pole of transplants
from suicide donors was preconditioned by the tension between the lack of public dona-
tions and the emergence of organ trafficking under inequalities where suicide was seen as
one of the growing wounds upon modernity.
Transplant’s brain-dead organ donor was an object, which first had to materialize in
translations, then attain meanings, and then be evocative enough to reach to individual
lives to move people to donate their bodies for medicine. Inventing a donor pool of “vic-
tims of suicide” that resembled anatomy’s “homeless cadavers” could be a way of reach-
ing out to the public to ask for donations for technological progress and healing. Subjec-
tivities were construed this way because nonpersons could be rehabilitated into full
personhood through technology, which utilized central cultural mechanisms in the
public sphere coded in language.
I I . T H E I N N E R S E N S O RY P O L E
Transplant’s inner life touched exactly upon those values that reminded people “who they
were” and “what they would become”—primarily with words loaded with affect. These
words touched the realm of the dead and evoked personal relations with God and religious
feelings and individual sensibilities—a domain that had proved to be the hardest to
transform, a domain where humane sensibilities toward life and death were forged. At
the heart of it lay the long-disputed concept of brain death.
Brain death is the criterion by which a body is declared dead and is made available for
organ harvesting. Its definition was first drafted in 1968 by a committee of experts at Har-
vard University in an effort to help increase the supply of viable organs for transplants. It
was later adopted in many countries as the standard for harvesting organs such as the
heart, liver, lungs, kidneys, and pancreas. In Turkey, the legal definition of brain death was
KEY ACTS • 42 7
physicians had reservations about how to challenge the public view of the value of the dead
body. The dispute had begun shaping the institutionalization process early on, and was at
a peak when the suicide harvest act took place. In a way, this was a modernist move toward
a soothing relationship with technology that utilized death for the well-being of the social
body through the act of forgiving and being forgiven. With such sensibility, it could invent
words and then attribute soothing feelings to them, contextualizing technology, allowing
common sense to flow, allowing progress to be seen not just as alien to human senses but
as something that one could relate to intimately through salvation.
In conclusion, I would like to call this kind of powerful act a key act, underlining its
significance as a key symbolic process that unites the technological to the sensory to
maintain or reset social values. A key act, in this sense, can be seen as a significant act
that allows the flow of common sense from the public to the private sphere; sheds light
on the emotions by which people live technology and politics; transforms social roles and
values for technological progress; and occupies a central place in collective life, activated
by its container, the dominant symbol. In the worlds of the dead and the living, which
“ritual sacrifice” traditionally bonded, I saw how symbols could play a significant role.
With the processes taking place in the container symbol, sacrifice—a powerful key act—
was placed into collective life ritualistically to justify means to an end and to restore a
tragedy into a bearable drama according with emotions and technologies.
At a deeper cultural level, transplants had to take place in a sealed space and in nontime
as far as human practices organized “life cycles” for the living and the dead; thus it was
not an economic realm of possibilities. The practice resisted liminality. Transplant sur-
geons themselves had to be convinced of “brain death” as real death, and then define a
new “mental space” and a new “ritual time” for this liminal biomedical human activity.
Only in this way, it seemed, could common sense rule again between public and private
spheres of collective life. Only in this way could transplant technology make a place in
people’s hearts, and become sensible. As such, suicide allowed the symbolic process to
be complete; it allowed healing both for the mourning family members of the victim of
suicide and for transplant patients. Cadaveric transplants from suicides could address all
these issues and open a positive relationship between technological progress and indi-
vidual well-being through the novel ritualistic forms embedded in sacrifice and its sym-
bolic process coded in the wording of bağıș, in forgiving and being forgiven.
N OT E S
1. I use the anthropological term endogamic here to refer to the closed social nature of
transplant practices and the organizations of its objects and objectives within its closed
REFERENCES
Altaylı, F. 1997. “Teke Tek: Ebruya Değil Aileye Bakın.” Hürriyet, November 13. http://hurarsiv
.hurriyet.com.tr/arsiv/.
Arkun, Nezahat. 1963. İntiharın Psikodinamikleri. Istanbul: Baha Matbaası.
Coşkun, N. 1997. “Gündem: Can Kardesler.” Hürriyet, December 6. http://hurarsiv.hurriyet
.com.tr/arsiv/.
Fox, Renne, and Judith P. Swazey. 1992. Spare Parts: Organ Replacement in American Society.
New York: Oxford University Press.
Gennep, Arnold van. 1960. The Rites of Passage. London: Routledge and Kegan Paul.
Gökmenoğlu, Hüseyin Tekin. 1996. İslâm’da Şahsiyet Hakları. Ankara: Türkiye Diyanet Vakfı.
———. 1997. “Gündem: Ebru Olayından Sonra Bağış Arttı.” Hürriyet, November 12. http://
hurarsiv.hurriyet.com.tr/arsiv/.
KEY ACTS • 42 9
———. 1998a. “Gündem: Organ Bağışında Büyük Artış Var.” Hürriyet, January 2. http://
hurarsiv.hurriyet.com.tr/arsiv/.
———. 1998b. “Gündem: Arkadaşın Ortak Kaderi.” Hürriyet, April 4. http://hurarsiv.hurriyet
.com.tr/arsiv/.
Haberal, Mehmed, G. Moray, H. Karakayali, Ali Bilgin, and N. Bilgin. 1998. “Transplantation
Practice and Legislation in Turkey: A Brief History.” Transplantation Proceedings 30:
3027–29.
Kahya, E. 1979. “Bizde disseksiyon ne zaman ve nasıl başladı?” Belleten 172:739–59.
Keskioğlu, Osman. 1969. Fıkıh Tarihi ve İslâm Hukuku. Ankara: Ayyıldız Matbaası.
Mauss, Marcel. (1924) 1990. The Gift: Forms and Functions of Exchange in Archaic Societies.
Translated by W. D. Halls. New York: Routledge.
Örnek Buken, N. 1996. “Organ Aktarımında Beyin Ölümünün Tıbbi, felsefi ve Teolojik Yön-
leri.” In Türkiye Klinikleri Tıp Etiği-Hukuku-Tarihi 4:82–84.
Sanal, Aslıhan. 2004. “Robin Hood of Techno-Turkey; or, Organ Trafficking the State of
Ethical Beings.” Culture, Medicine, and Psychiatry 28 (3): 281–309.
———. 2005. “Flesh Mine, Bones Yours.” PhD diss., MIT.
———. 2011. New Organs within Us: Transplants and the Moral Economy. Durham, NC: Duke
University Press.
Şehirli, Ümit Süleyman, E. Saka, and C. Sarıkaya. 2004. “Attitudes of Turkish Anatomists
toward Cadaver Donation.” Clinical Anatomy 17:677–81.
Sever, Aysan, and Rustem Erkan. 2007. The Dark Faces of Poverty, Patriarchal Oppression, and
Social Change: Female Suicides in Batman Turkey. Working Papers no. 282, Office of Inter-
national Development. East Lansing: Michigan State University.
Taşdemir, A., and S. Genç. 1997. “Çıldırtan Ayrılık.” Hürriyet, November 7. http://hurarsiv
.hurriyet.com.tr/arsiv/.
Titiz, İzzet. 2000. Renal Transplantasyona Pratik Yaklaşım. Istanbul: Eczacıbaşı İlaç Pazarlama.
Turner, Victor W. (1967) 1981. The Forest of Symbols. Ithaca, NY: Cornell University Press.
———. 1995. The Ritual Process: Structure and Anti-structure. New York: Aldine de Gruyter.
What does it mean to undertake a colonial history of death and life? Medical historians
and anthropologists of African clinical and therapeutic spaces have been turning to
memory traces and material remains of projects in science, medicine, and development
as source material for interrogating relations between Africa’s pasts and present. Some
use concrete archives, ruins, or more affective traces like nostalgia, often in relation to a
present of relative crisis, in order to better understand the past and present of illness,
suffering, medicine, and science.
Such work poses questions that are first and foremost methodological: how may we
locate and work with diverse kinds of memory and concrete traces? Whether we think of
memory as collective or individual, social or autobiographical, whether the focus is life
or death, it always involves subjectivity. Memory borders on the imaginary and the affec-
tive, even though much intellectual and cognitive content is often included as well. Mem-
ory obviously involves an orientation to time: with memory, one often looks backward
and remembers. A memory object or commemorative event turns to or contains the past.
When historians work with material objects that collect or condense memory and signify
or suggest a past, these traces may involve temporal layers. Material remains provide a
vantage point for posing questions about the production of life and death in the past, or
they may be visceral sites that enable narrative memories or feelings (Hunt 1999).
Yet what does this methodology have to do with life and death? My questions revolve
around how “spaces of experience” and “horizons of expectation,” to use Reinhart Kosel-
leck’s (2004, 255–76) language, may enable moving historical perception beyond illness,
43 1
suffering, and death alone, and toward life and its production of joy and futures. What do
we gain by moving beyond memory and debris as our primary methodological anchors
for our ethnographic histories? When should we set aside temporal orientations of event–
aftermath, past–consequence in the ways we narrate history, thinking not in terms of the
impact of event on subsequent experience and remembering? What do we gain by reading
our sources to discern “horizons of expectations,” or reverie—to use the language of Gas-
ton Bachelard (e.g., 1987, 2004)? In a sense, the move is one from death to life.
My work in assembling a history of the Equateur region of colonial Congo wrestles
with these questions. There is surely some event–aftermath to its temporal structure. A
Nervous State (Hunt 2015) begins with event as death and suffering, with the atrocious
violence in the Equateur region of King Leopold’s Congo Free State in the 1890s
and 1900s. The sources require it to interrogate aftermath—that is, medical and demo-
graphic issues that became a colonial obsession in the 1930s, 1940s, and 1950s. Gonor-
rhea rates were high. Childlessness affected about one-third of women; and the miscar-
riage rate sometimes exceeded the birthrate. Event–aftermath was present within colonial
perceptions at the time; trauma, though not always voiced or acknowledged, was often
implicit in the mood of colonial dread permeating the colonial medical archive. In a demo-
graphic, reproductive sense, this case is fitting material for an event–aftermath narration
that places a premium on death as disaster. If I were to follow the paths of historians and
anthropologists working in the fields of trauma studies or studies of social suffering, a
portrayal might emerge of Congolese remaining in this equatorial region as forlorn,
bereft, and miserable. Some doctors’ reports suggest as much. A few doctors in the 1950s
looked to the terribly violent past as the source of conditions of reproductive mishap and
disruption. Were they wrong? Quite likely not. Yet should we stop there? Surely not.
The same temporal logic—event-aftermath, shock–trauma—was integral to colonial
degenerationist medicine at the time. Implicit was the idea that the “shock” of colonialism
had had somatic effects, producing a frail race unable to reproduce itself. From a magis-
trate-novelist to doctors to missionaries, many Europeans broached everyday life with
gloom and saw a damaged people marked by stigmata. Is the medical and demographic
evidence wrong? Probably not, or surely not entirely anyway. But the way we introduce
such material on reproductive disruption into historical narrative matters very much.
At my disposal is a remarkable set of some 170 essays written by Congolese in the early
1950s (Boelaert et al. 1995, 1996). They are memory texts about the same violent decades
of conquest, rubber, wars, and mutilation of the 1890s and 1900s. This rich memory
archive is striking for two reasons. First, several Congolese authors recount how their
elder informants objected to speaking about this traumatic past; they did not want to
remember. They were refusing memory, in a sense. Were they refusing to locate them-
selves temporally as the aftermath to death? Perhaps. These accounts also suggest, how-
ever, that some memories about this time of horrific violence were full not of death but of
life. They told of reverie, of times of music and feasting, of making powerful medicinal war
charms that produced victories against the white man, and enabled wonder amid violence
REFERENCES
Agamben, Giorgio. 2000. “What Is a Camp.” In Means without End: Notes on Politics, translated
by Vincenzo Binetti and Cesare Casarino, 37–45. Minneapolis: University of Minnesota
Press.
Bachelard, Gaston. 1987. On Poetic Imagination and Reverie: Selections from Gaston Bachelard.
Rev. ed. Translated by Colette Gaudin. Dallas: Spring Publications.
———. 2004. The Poetics of Reverie: Childhood, Language, and the Cosmos. Translated by
Daniel Russell. Boston: Beacon Press.
PRECARIOUS LIVES
. . .
In her writings on war, grievability, and mourning, Judith Butler (2004, 2009) proposes
“precariousness” as a generalized condition of life: the living being requires supports to
survive. While Butler defines precariousness as a fact of an embodied existence independent
of forms of life, she also seems compelled to continually remember that this existence is
embedded within the social. The chapters in this section, however, attend to precariousness
from a different vantage point. By attending to the ways in which sociality is struggled for and
the price of belonging, these chapters are pointing to the fraught and precarious claims to a
“we.” As we saw in the introduction to this book, the assumption of a “we” that has underwrit-
ten many of the large claims behind such overarching concepts as those of “biocitizenship”
and “biosociality” manages to eclipse the differences in biological conditions and their dif-
ferential possibilities for forming collective identities. We took the insight from Wittgenstein
that the fragility of our forms of life relates to the fragility of our agreements. The chapters
here elaborate further that such agreements are not arrived at once and for all since they are
not based on any contractual models of belonging but are a testimony both to the ways in
which individual lives endure and strive for possibilities of life together, and to the tensions
between experience and standing languages that might come in the way of aligning one’s
own voice with the collective representations of who or what one is supposed to be.
In exploring the fragility of the “we” that arises both in moments of crisis and in the
very enduring and striving in everyday life, these chapters also present us with an
expanded view of the ethical and the political and their relation, though we appreciate
how such questions as who belongs to a collective political project and how violence is
endured are not transparent. The political and ethical may emerge in minute actions and
one-to-one encounters in which belonging is secured or individuals fall out of collective
cohabitation as much as they emerge in dramatic enactments and public actions.
In the first chapter of this section, “Life and Concept,” Michael D. Jackson (chapter 25)
offers a probing discussion of the tensions between experience and collective representa-
tion in quotidian encounters of indigenous life in Australia, in a context of war in Sierra
Leone, and in conversations with African migrants in Europe. Turning to both an event
within the ordinary and an event of crisis, Jackson elaborates the oscillation between modes
of experience that outstrip concepts at hand and modes of experience in which concepts at
hand organize and make intelligible lived experience. This tension between collective rep-
resentation (the concept, the abstract idea) and subjective experience tracks through Jack-
son’s conversations with African migrants in Europe, as well as with his reader. He sees
this tension as analogous to the desire to “consummate oneself” or “cultivate one’s own
garden,” a desire in tension with the circumstances that shape our lives and the responsibil-
ity to others, “working on one’s father’s farm.” Indeed, Jackson is asking what it is that
might be common to all humans; might we locate a dialectic of subjective experience and
REFERENCES
Butler, Judith. 2004. Precarious Life: The Powers of Mourning and Violence. London: Verso Press.
———. 2009. Frames of War: When Is Life Grievable? London: Verso Press.
Michael D. Jackson
In charting the “divided and dialectical character” of French philosophy through the
twentieth century, Alain Badiou (2012, liii) draws a contrast between Henri Bergson’s
“philosophy of vital interiority” and Léon Brunschvicg’s mathematically based “conceptual
formalism.” Both philosophers published seminal works—in 1911 and 1912, respec-
tively—initiating radically different intellectual orientations and genealogies: the first
focused on life; the second focused on the concept. As Badiou notes, though both orien-
tations “coincide” in the human subject, who is simultaneously a living organism and a
creator of concepts, the quarrel between the “existential vitalism” of thinkers like Bergson,
Sartre, Merleau-Ponty, Bachelard, and Deleuze and the “conceptual formalism” of think-
ers like Brunschvicg, Lévi-Strauss, Althusser, and Lacan is never resolved. The illusion
persists “that the concept can transcend the concept” and “thus reach the nonconcep-
tual”—and this remains “one of philosophy’s inalienable features and part of the naïveté
that ails it” (Adorno 1973, 9). Similar dilemmas and divisions have pervaded late-twenti-
eth-century cultural anthropology, for while some anthropologists argue that human
emotions, thoughts, sensibilities, motivations, and interests are largely shaped by cultural
and historical forces, others emphasize the surprising malleability and multiplicity of the
human subject, whose potential to adapt to different situations and respond to other
human subjects renders it irreducible to the conceptual forms and essences with which
it is customarily identified.1
In arguing for the complementarity of these perspectives, I have often invoked Sartre’s
“progressive-regressive method,” whose focus is the dynamic relationship between the
449
preexisting conditions that circumscribe an individual’s possibilities and the purposeful
actions whereby that individual projects himself or herself into the world, making some-
thing of what he or she was made (Jackson 1998, 27; Sartre 1968, 150–51). According to
this view, concepts are like tools and techniques that lie ready-to-hand; whatever meaning
they may have acquired in the minds or at the hands of others, one takes them up and
deploys them on one’s own terms, in relation to one’s particular situation or project.
Rather than separate concept and existence, we therefore seek “to demonstrate that the
concept is a living thing, a creation, a process, an event, and, as such, not divorced from
existence” (Badiou 2012, lxi). At the same time, however, it is important to acknowledge
the limitations of any tool—material or conceptual—in securing the ends to which it is
applied, be this interpreting the world, changing the world, or renegotiating our relation-
ship with the world. In stressing the nonidentity of words and worlds, thought and being,
Adorno’s negative dialectics reminds us that concepts never fully cover or contain our life
experiences (Adorno 1973, 5, 8). As I will show, Adorno’s critique of identity thinking
uncannily echoes Wilfrid Bion’s observation that “the mental domain . . . cannot be con-
tained within the framework of psychoanalytic theory.” “Is this a sign of defective the-
ory?” Bion asks, “or a sign that psychoanalysts do not understand that psychoanalysis
cannot be contained permanently within the definitions they use? It would be a valid
observation to say that psychoanalysis cannot ‘contain’ the mental domain because it is
not a ‘container’ but a ‘probe.’ ” (Bion 1975, 65). Yet we cannot resist reifying our concepts
and fetishizing our tools, confusing means and ends, allowing ourselves to become
estranged from the life situations that our worldviews were intended to make intelligible,
so that the concept appears to possess a life and logic of its own. Mathematically speak-
ing, a concept cannot be divided by life without leaving a remainder, and it is “the mem-
ory of this remainder that haunts us” (de Certeau 1984, 14). No matter how sophisticated
our concepts become, they fail to do justice to what William James called the “plenum of
existence”—the full range of human experience, intransitive and transitive, fixed and
fluid, rational and emotional, coherent and wild, real and symbolic. But while concepts
are epistemologically flawed, they remain existentially necessary, for like other discursive
and practical techniques, they enable us to process experiences that threaten to over-
whelm us, and give us consolation that life is intelligible, comprehensible, and control-
lable. I use the image of the penumbral2 to capture this ambiguity of our experience as
it oscillates between what we can and cannot grasp. The penumbral bears comparison
with what Jaspers (1997) calls “the Encompassing” (das Umgreifende) or refers to as “bor-
der situations” (Grenzsituationen)—situations in which we come up against the limits of
language, the limits of our strength, the limits of our knowledge, yet are sometimes
thrown open to new ways of understanding our being-in-the-world, new ways of connect-
ing with others (Jaspers 2000, 97). Whether such border situations are quintessentially
“religious,” “spiritual,” “historical,” “social,” or “biographical” may be beside the point,
for though such terms help us describe the conditions of the possibility of our experience
or help us retrospectively explain our experience to ourselves and to others, the meaning
M AT T E R S O F L I F E A N D D E AT H
Taking a leaf out of Badiou’s book, let me begin with two concrete events from my fieldwork
among the Warlpiri of central Australia and the Kuranko of northeastern Sierra Leone.
In the winter of 1990, my wife and I were living in the Warlpiri settlement of Lajamanu
in the northern Tanami Desert of central Australia. Our trailer was parked under a ghost
gum behind the Wulaign Outstation Resource Centre—a prefabricated, aluminum-sided
shed and center of operations for the Central Land Council, under whose aegis Francine and
I were doing our fieldwork. Wulaign’s veranda afforded shade, and I would sometimes sit
there with older Warlpiri men, clumped together on the concrete as if a single body. One
afternoon we were joined by Barnaby Japaljarri, a thickset, middle-aged man with a pen-
chant for pama (“sweet things,” including alcohol), but whose grumpy and taciturn manner
suggested complete indifference to our desultory talk of Dreamings and related matters.
Suddenly, Japaljarri toppled over. I thought he might be drunk and had passed out. But the
other men did not even stop to think. Moving as one, they reached out to him, pressing the
palms of their hands against his body and his head. A few minutes passed, and Japaljarri
revived. Not a word was said as he sat up, resuming his place among us.
What prompted the men to act as they had?
If a person loses consciousness, as Japaljarri had, it meant that his life force (pirlirrpa)
had momentarily deserted him. To prevent this loss of life, this draining away of the
pirlirrpa, one placed one’s hands on the body of the afflicted individual—holding him
together, so to speak; containing him.
The second event was the invasion of the Kuranko village of Kondembaia by Revolu-
tionary United Front soldiers in 1999. Sporadic gunfire signaled the arrival of the rebels.
People were seized at random and assembled under one of the great cotton trees in the
center of the village. There, drug-addled rebels used one of the tree’s buttressing roots as
a butcher’s block to sever the limbs of their victims. Forty men, women, and children
were murdered that day, and three years later survivors would recall the event in a series
of disconnected phrases: Yuge bi nala (“Badness has come”) was the first terrified cry.
Then, as word spread of what was happening, Ma faga yo (“We are being murdered”), A
bi na faga (“They are killing us”), Ma bin na faga (“We are all dead”). And finally, Allah
ma ma dembe (“God help us”), Kele na l bama (“The world is coming to an end”). It was
as if the event unfolded outside of people’s ability to process it—“an unbearable sequence
of sheer happenings” (Arendt 1973, 106).
These events are critical events (Das 1995)—matters of life and death. They were
experienced limbically, as it were, rather than cerebrally. For as long as the event lasted,
one’s experience was neither comprehensible nor narratable.
T H E D I A L E C T I C O F C O N TA I N E R - C O N TA I N E D
T H E O E D I PA L P R O J E C T
In the course of recent fieldwork among African migrants in Europe (Jackson 2013), I
recorded a series of conversations in Amsterdam with Ibrahim Ouédraogo, a young man
from Burkina Faso. In the following excerpt, Ibrahim describes his childhood longing to
leave his village and explore the wider world.
“My father was the tenga naba [village chief ]. Our family had always been in the village. We
could not move as others did. There were times when I thought about it, but I knew my
father’s importance in that place, and why we had to stay.”
“Why did you want to move? Was it because of the drought, the famine?”
“Not really. From age seven, I wanted to go elsewhere. You feel it inside. You can’t give
words to it, but it’s a strong feeling, to go to a big town, to move elsewhere. When visitors
came, I always wanted to be present, to hear the stories about where they came from. I was
always being chased away! When I saw people who lived in bigger villages or towns, I was
curious to know what life was like in those places. There was no school in my village, so I
was curious to know what school was like. I wanted to discover things on the other side,
though I could also see that people in towns had more to eat than in the village.”
When the American anthropologist Della McMillan first visited Burkina Faso in 1977,
people in the village of Damesma were suffering the effects of declining crop yields, low
income, and impoverished soils, and many were leaving the village to resettle in river
basins where “some of the most debilitating diseases known to humanity—malaria,
schistosomiasis, sleeping sickness (trypanosomiasis) and river blindness (onchocercia-
sis)”—had been partially brought under control (McMillan 1995, 1). I was therefore sur-
prised that Ibrahim would downplay climate change and hunger as reasons that his
thoughts turned to places beyond the horizon as offering the chance of a more fulfilling
life.
I instantly recalled Aureliano Buendia’s last memory in Gabriel García Márquez’s One
Hundred Years of Solitude—of a distant afternoon when his father took him to see a block
of ice. Ibrahim continued:
“I had never seen ice before. I asked myself how it was possible. Was it magic, or what? It
wasn’t water. Water could not be solid. I could not believe it was real. But they were selling
wooden sticks with ice formed around them. There was a long line to buy one. I asked what
was going on. When they told me, I joined the line.”
“Were there other things that you found surprising?”
“Yes, everything!”
“For example?”
“The houses, the cars . . .”
“Had you never seen a car?”
“I had seen one, two or three years before, but not up close. Now we could run up to it
and look at it, look at the tires, the places where people sat. We could walk around it, and
look at it properly.”
“When you returned home to Damesma, what did you remember about Kaya?”
“I knew that my life would be better in a bigger place. I thought, ‘Maybe one day I will
go far,’ but I had no way of doing this. I could not move without my family, and my family
had to stay in Damesma. So I stayed, too.”
I spoke briefly to Ibrahim of American teenagers rebelling against their parents, and
asked him if he had ever rebelled.
“Sometimes I would refuse to help my mum when she wanted me to work in the fields. I
would refuse to carry the peas or the water. I’d say, ‘I’m going to a party.’ She would say, ‘I
need you to work,’ but I would go to the party just the same. I’d do things she didn’t approve
of. For example, she would prepare some food especially for us, but I would say, ‘No, this is
no good, make it differently,’ or I would steal some sugar or sauce, or beans or maize, and
go and cook my own food on a fire in the bush. Or I would go out in the morning and come
home late at night. Go hunting. Things that our parents didn’t want us to do, but that we
felt we had to do at that age. If you don’t do what you want to do, you’ll regret it later.”
“How old were you at this time?”
“Around eighteen. I didn’t rebel so much against my father. But with my mother it was
very different. When I got older and thought about it, I realized it was something you have
to do at that age to know life, to discover society. Even girls will rebel, going off with boys,
stealing, having sex, sometimes getting pregnant. In Burkina we try to keep these things
hidden, but here [in Amsterdam] it’s much more out in the open. You see children on
television screaming at their fathers, ‘I don’t want that! I’m not going to do that!’ Back home
you would not see that. Parents are more respected.”
“It’s because of our culture. This responsibility to our family and to our parents is always
on our minds. We think, ‘Is this really what I should be doing? Do I have the right to do
this?’ Even if our parents are dead, we ask ourselves if it is really necessary or really right
to do what we are doing. We grow up with this. We can’t overcome this way of thinking.
It’s something we are born into. Sometimes I feel guilty about being in Europe without my
parents’ blessings. Or I think back to the time when I was finishing Qur’anic school, and
my mother wanted me to return to Damesma. Even now, I regret not respecting her wishes.
She died before I could explain to her why I could not go back. When I was working in the
hotel in Ouaga, my father would come to visit me. He would say he had arranged for me
to marry. I would tell him that it wasn’t time, it wasn’t good timing. I would put him off
rather than do his bidding. Now I wonder whether my refusal to take his advice led to his
death, and whether I am going to have bad luck in life because I went against his will.”
The process of becoming a person in one’s own right is characterized by a tension that
is never fully resolved, for the desire to become autonomous is countermanded by a
yearning to be dependent, the desire to do what one wants is no less urgent than the
desire for limits, and the dream of a more fulfilling life for oneself comes up against one’s
sense of responsibility for and indebtedness to others.
For more than forty years, my fieldwork among the Kuranko of northeastern Sierra Leone
has provided me with culturally specific examples of how freedom is never limitless but
exercised within limits, contained rather than unconfined.5 Whereas one’s social identity
is determined patrilineally (and one’s physiological essence stems solely from one’s
father’s semen), one’s destiny may depend as much upon one’s mother and mother’s
brother as on one’s father and his brothers. This counterpoint between a space dominated
by rules and a space of greater informality, affection, and playfulness finds expression in
the contrast between one’s father’s place (fa ware)—the place where one was born and
4 60 • MICHAEL D. JACKSON
NOTES
1. “We are entirely made up of bits and pieces, woven together so diversely and shapelessly
that each one of them pulls its own way at every moment. And there is as much difference
between us and ourselves as there is between us and other people” (Montaigne 2004, 131).
“Properly speaking, a man has as many social selves as there are individuals who recognize him
and carry an image of him in their minds” (James 1950, 294).
2. From the Latin paene (“almost”) plus umbra (“shadow”), the penumbral connotes a
phenomenologically indeterminate zone “between regions of complete shadow and complete
illumination,” “an area in which something exists to a lesser or uncertain degree,” and
“an outlying surrounding region; a periphery” (American Heritage Dictionary, 4th ed., s.v.
“penumbra”).
3. Kaya is a provincial capital on the Mossi Plateau, a center for weaving and tanning. When
Ibrahim first visited that city it had a population of about thirty thousand.
4. I borrow and adapt this term from Norman O. Brown (1985).
5. I refer here to my recent ethnographic study of Firawa—the Kuranko village in which I
first did fieldwork in 1969 (Jackson 2011). A sequel to this work, focused on African migrants
in Europe, was published 2013.
6. A similar contrast may be drawn between the formality of relations within one’s own
generation and relations with grandparents, with whom, as with the mother’s brother, a play-
ful or “joking” relationship obtains.
7. George Lakoff argues that this same tension between patriarchal control and maternal
care finds expression in American political ideologies. While liberals emphasize the respon-
sibility of the state to care for its citizens, conservatives emphasize the state’s responsibility to
protect the country and its constitution (Lakoff 1996, 62–63; cf. Hage 1996, 463–85).
8. David Graeber points out that this substitution of money for life explains why debts are
often collected in the form of “bloodwealth,” or through the taking of life, or pain inflicted on
the body of the debtor (2011, 133).
REFERENCES
Adorno, Theodor. 1973. Negative Dialectics. Translated by E. B. Ashton. New York: Seabury
Press.
Arendt, Hannah. 1973. Men in Dark Times. Harmondsworth, UK: Penguin.
Badiou, Alain. 2012. The Adventure of French Philosophy. Translated by Bruno Bosteels. London:
Verso.
Bion, Wilfrid. 1975. Attention and Interpretation: A Scientific Approach to Insight in Psycho-
analysis and Groups. London: Tavistock.
Bloch, Ernst, and Theodor W. Adorno. 1988. “Something’s Missing: A Discussion between
Ernst Bloch and Theodor W. Adorno on the Contradictions of Utopian Longing.” In The
Utopian Function of Art and Literature: Selected Essays, translated by Jack Zipes and Frank
Mecklenburg, 1–17. Cambridge, MA: MIT Press.
Brown, Norman. 1985. Life against Death: The Psychoanalytical Meaning of History. Middletown,
CT: Wesleyan University Press.
4 62 • MICHAEL D. JACKSON
26
NEVER QUITE GIVEN
Calling into Question the Relation between Person
and World in Postinvasion Iraq
Hayder Al-Mohammad
I first met Adel in the summer of 2005. I had checked in to the hotel where he was work-
ing as a security guard. I saw Adel from some distance making his way to the entrance
of the hotel, and out of politeness, and some curiosity, I waited for him with the door
open. He did not notice me. He walked straight into my chest. His dark blue shirt, many
sizes too large for him, hung over his dark blue trousers. His skin was thick and scorched,
even for a Basran who lives with summer heat exceeding forty-five degrees Celsius for
many months of the year. He looked at me, wondering what I was doing holding the door
for him, then made a remark or two under his breath and moved on hurriedly.
It was my first time in Iraq as an adult that summer. I was born in Baghdad in 1982,
but my family and I were to leave the country only a few months later. I didn’t know many
people in Basra and Baghdad in those early days, so I spent much of my time initially in
the hotel and the surrounding areas. Adel, like many of the other workers in the hotel,
became a good friend of mine in a relatively short time. His twelve-hour shifts were
meant to begin at seven in the evening. He worked every day except Sundays, his day off.
I never knew Adel to arrive on time for his shift even once, however; nor can I remember
a week when he worked all six days. That was Adel.
At the time, the city of Basra was under the control of militias, gangs, and thugs.
Furthermore, no one could be quite sure what the British soldiers roaming the streets
might stir up. Thus, few ventured beyond their homes or places of work. The hotel work-
ers, guests, and I were usually locked in the hotel by the evening. It was in those years of
having little to do that Adel and I would talk endlessly about the price of cigarettes, my
46 3
life in the United Kingdom, and the different personal struggles he and I were going
through. Adel took tremendous interest in my life in the United Kingdom, my life as a
PhD student, and other such trivialities. We’ve all got problems. . . . It doesn’t matter how
big or small they are, in the end they always produce the same headaches. That was Adel’s
mantra. Life was one big long headache unto death.
In one of our conversations, several years after I first arrived in Basra, Adel turned to
me as we stood outside the hotel alone, asked me for a cigarette, and then shook his head,
muttering silently, I just can’t make it work. He was referring to his life and how at his
age—he was then in his early forties—he had not been able to secure any stability for
himself and his family. People have built homes, they have cars, and cars for their children.
Even a foreigner, even someone from a different planet could have found a way to build a proper
life in this country . . . everyone but me. The dehiscence of Adel and his world was a con-
tinual theme in our conversations throughout the years. It was never articulated as a
sense of foreignness or alienness in his world, but rather that some gap between him
and the world was, at the very least, forever requiring surmounting in his struggles for
money and security for him and his family. Or worse, that the gap between him and the
world of postinvasion Iraq was an insurmountable one—always there from the very
beginning, but becoming greater with his poverty and uncertainty.
Such “gaps” or “schisms,” however, should not be dismissed glibly as merely private
mental events. Nor should we as anthropologists recoil from the idea that persons are in
as much doubt (maybe more?) about their own socio-cultural lifeworlds as the ever-
inquisitive anthropologist is. More than half a century ago, the philosopher Wilfred Sell-
ars (1997) attacked the epistemologists and philosophers of mind of his time for the “bad
philosophical habit” of seeking the unmediated grounds of contact between person and
world. This “bad philosophical habit” came to form, according to Sellars, the “myth of
the given”: it could not dispense with the idea that there lies a primordial bedrock upon
which truth claims, perceptions, and judgments rest.
Anthropology, however, is not without its own “given.” Not necessarily universal, but
ubiquitous enough to require, if not debunking, then certainly critical work. The given
in anthropological inquiry goes something like this: people exist within socially, cultur-
ally, and historically specific contexts. They just do—that is not up for question! We are
dealing here in bedrock claims; to dig any further, the spade will simply turn. The easi-
ness by which we assert, or unquestioningly proceed by, such seemingly uncontroversial
claims disquiets me, and I imagine a fair few others (cf. Dilley 1999; Last 2007). Is it
really as easy as that? The relations of person and world are just a dumb given? Or maybe
it is more of the order, as Wittgenstein once put it: “[T]he questions we raise and our
doubts depend on the fact that some propositions are exempt from doubt, as it were like
hinges on which those turn” (1969, §341).
There is, however, far too much at stake in simply asserting a relation given between
person and world. More than the critical work of clarifying anthropological categories,
the relation between person and world, and its givenness or otherwise, is at root an
4 64 • HAYDER AL-MOHAMMAD
ethnographic problem. If person(s) and world are fundamentally related in some form
or another, related in a way that is just given, then the anthropologist is simply left to
elucidate, account for, or engage with the heterogeneous ways in which that fundamental
relation, or relations, is played out in the world. Defeating a picture of sociality as origi-
nating from a wordless subject, or disembodied Mind, as Cartesianism has been charac-
terized and caricatured as, has certainly been the thrust of much work throughout the
last several decades. However, the corrective work to disturb the perceived certainties of
one episteme has come at a cost. The world as just given to persons should disquiet the
anthropologist and social scientist as much as the positing of the Mind prior to the living
of life itself.
Many anthropologists and social scientists have turned to Heidegger’s felicitous for-
mulation, though less to its actual adumbration and explication, of “being” as “being-in-
the-world” to counter the priority given to mind and being over the world. Heidegger’s
hyphenation of the terms does not just signal their intrinsic relation. Rather, the terms
are primordially one. Are persons born into this oneness, or is coming to be in the world
a project that persons take on resolutely, in their everyday, affective, spiritual, and extra-
mundane work?
Anthropological inquiries into medicine and ill health have done much to make pre-
carious the grip personhood has on well-being, worldhood, and life itself, and to indicate
some of the possible tensions or frailties inherent to being-in-the-world. Considerable
literature is available on the lived experience of disability in general (Charmaz 2000;
Kay-Toombs 1992; Kleinman 1988; Murphy 1987) and of the experiences of suffering,
violence, and ill health (Good et al. 1994; Irving 2004), which draws attention to the
disruptive and destructive impact such experiences have not only on a person’s own life,
but on personhood itself—its very enmeshment in sociality and the world. In rather
general terms Arthur Frank, in his book The Wounded Storyteller, notes of disease: “In
the beginning is an interruption. Disease interrupts a life, and illness then means living
with perpetual interruption” (1995, 56).1 Even in such domains as medical anthropology
and sociology, however, which highlight the breakdown and reconfiguration of the rela-
tion of body and world within the complex of being-in-the-world, much of the stress is
of disease, injury, or ill health as a form of disruption into life, which is taken as almost
without disruption.
This chapter is not an investigation into how breakdown opens up a disclosive space
to engage the conditions of possibility of social life; it is not about how registers of suf-
fering, uncertainty, or the looming figure of death and the limits of life open different
horizons of meaning, intelligibility, and experiences. Rather, I turn to exchanges,
moments, and events from my friendship with Adel, and how his struggles to keep him
and his family alive during the violence and uncertainty of postinvasion Iraq point to a
much more unsettled and fraught relation between Adel and the everyday world in which
he tries to make his way. It was neither illness nor any injury that interrupted the flow of
Adel’s life, but the flow of life itself, which was continually caught in the turbulence of
E V E RY D AY S T R U G G L E S
Whenever Adel would finally appear for his twelve-hour shift in the evening, he would
rush to the hotel’s kitchen, pour himself a large mug of tea, and stand outside chatting
with whoever was prepared to have a chat with him. Or he would run off somewhere on
an errand that he claimed was urgent, or disappear to sleep on some cardboard next to
the hotel generator, where he was well hidden from view. He had to be back at his station
in the front of the hotel before eleven in the evening, however, because the sheikh2 who
was running the hotel on behalf of the owner would come back to check the receipts of
the restaurant and the hotel for the day. The sheikh would ask to see all the hotel’s employ-
ees and would consider it a personal offense if they were not fulfilling the roles they were
being paid for. Those of us in the hotel, workers and guests, would rush to find Adel to
either wake him or shout down the road in the hope he might hear us and return before
the sheikh arrived.3
The workers in the hotel did not particularly like Adel. He was not related to anyone
there, and his tribe was small and considered to deal in petty crime and little else. In the
hotel Adel was the butt of many jokes; we all were, but Adel more so than the rest. During
the peak of the violence in Basra between 2005 and 2008, the militias would battle among
each other in front and behind the hotel. Mortars would fly over the hotel, inadequately
directed somewhere in the region of the Palace, where the British Army was resident,
though landing anywhere but at the Palace in most cases. Street shootings, kidnappings,
rape, and dead bodies on the streets were not events out of the ordinary during that period.
In such circumstances, it made the figure of Adel, or rather the position he was in—of
having to be the first line of protection against any attack on the hotel or its occupants—
seem utterly ludicrous. Adel was, at best, a security guard in name only.
At night, after the sheikh had left, Adel would sleep on the hotel doorsteps, with an
inadequate fence between him and the street. He was bitten by rats, bugs, and even dogs;
stray bullets glowing red and yellow in the dark night would stream across the sky as he
tried to get some sleep. He would awake at five or six in the morning, breakfast quickly,
and run to the open market. From seven in the morning till four in the afternoon he
could be seen selling remote controls, or batteries, or whatever he had at hand. Under
the extreme heat of the summer sun, among lots of other sellers, Adel would shout and
scream what he was selling at the passers-by to try to gain their attention. He was not the
4 66 • HAYDER AL-MOHAMMAD
only one shouting and competing for the attention of buyers; bigger stalls had loudspeak-
ers that drowned out his voice, and some had cassettes playing on a loop that announced,
through large speakers, the product being sold and its price. By the time he arrived for
his shift at the hotel in the evening, Adel’s throat was sore, his voice coarse, his skin
scorched by the sun, and his face somewhat dazed and tired. Many days he sold nothing.
Although he had six daughters (two at the University of Basra) and three sons—only one
was working; the other two were either at a technical college or at the University of
Basra—his dejection never seemed to reach panic. Instead, he was resigned to play this
all out again the next day. The math was simple: his monthly income as a security guard
was approximately $160, and six days a week in the market rarely brought in more than
$120 per month. His rent was a flat $200, and from somewhere he had to find enough
to feed and support his family.
Adel’s position was always a precarious one. He could not fulfill the role he was being
paid for, and his attitude to his job was careless. On rare occasions Adel could be lucky.
Some years ago he was resting at the reception bar with a large mug of tea, telling one of
his tall tales. Everybody was laughing. I walked in amid the fuss, and Adel warned me
that in a few months he would be giving up his job and would stay in the room opposite
mine in the hotel. “Did you marry a rich woman?” I asked. Better. I was sleeping and needed
to urinate. It was about 5 a.m. I get up and behind the palm tree in front of the hotel door and
am about to unzip my trousers when Abu-Mustafa [the owner of the hotel] spots me, thinking
I am doing my morning checks. “We need someone like you who is prepared to stay awake all
night,” he said to me. I’ll be managing his businesses in Basra in a few weeks. . . . You all better
show me some respect. . . . The hotel staff and I were all laughing. We knew Abu-Mustafa
was desperate to be rid of him. He thought Adel was unclean, stupid (“hmaar,” i.e., a
donkey), and an embarrassment to the hotel, but this bit of luck would keep Abu-Mustafa
quiet about Adel for a while.
Adel’s ability to maintain his job at the hotel even though several of the employees
wanted to be rid of him so they could bring one of their own relatives to fill his post; his
ability to stand among lots of other sellers on the street around the grocer’s souk in Al-
Ashar, the commercial center of Basra, and shout and scream his way to being noticed
by passers-by in the hope that they would buy whatever he had to sell that day—these
things were only a small part of the relentless work Adel and his family put in to try to
sustain themselves. Any picture of, or attempt at describing, the souk where Adel worked
in the center of Basra could not account for the heat, the smell, and the violent sounds
of hundreds of megaphones announcing, repeatedly, the names and prices of the prod-
ucts on sale by each vendor. In this great sonic battle Adel, one voice among a cacophony
of mechanical sounds, shouted out what he was selling for seven or eight hours every
day, six days a week. The sound from a person’s voice is different. My throat and head hurt
every day, but I tried the megaphone and I did not sell anything.
We didn’t have anything. After the invasion [March 2003] there was no work and money. I
took what we had in our house to sell in “souk al-haraj.” Our things ran out and I saw others
U N R AV E L I N G A N D D I S E N TA N G L I N G
By 2009 the security situation had improved tremendously in Basra. The Iraqi govern-
ment had launched Operation Saulat Al-Fursan (Charge of the Knights) the previous year
to dismantle the control the militias and gangs exercised over Basra. It was much safer
to travel in the evenings, and many coffee shops, restaurants, and businesses were stay-
ing open till late in the evening and into the early hours of the morning. I was spending
less time in the hotel during that period because I was out meeting friends and acquaint-
ances who were more prepared to venture out during the evenings. The more I was out
meeting friends in Basra, the less I was in the hotel and talking to Adel. Nevertheless, I
would hear stories from the other hotel workers and sometimes even from the guests,
who had begun to slowly increase in number. Abu Zaynab, the evening receptionist, said
to me: It’s impossible to hide Adel’s craziness from all these people. Whereas Adel was previ-
ously considered eccentric and slightly rude at times, with the increase in the number of
guests in the hotel he was now seen as someone “crazy”; someone who had the potential
to scare customers away. Adel was also becoming a stranger in the place where he worked.
New staff had come into the hotel as others found work elsewhere when the economy in
Basra began to improve. The relations Adel had formed, even antagonistic ones, through
many years of working together with men and women such as Salah, Hazim, Ammar,
4 68 • HAYDER AL-MOHAMMAD
Ahmed, Oum Karim, and Oum Zaynab, and his sense of who he was in that hotel was
beginning to fall apart.
One particular evening I was chatting to a group of shop owners near the hotel. I had
come to know them well through the months and years of being at the hotel and buying
water and soda in their shops. Two of us were hungry but did not want a proper meal, so we
wandered down the street to buy some bread and maybe eat a bowl of hot chickpeas from
one of the street sellers. I was irritated at the time by some builders dumping their waste on
the street, blocking almost any traffic. Because I knew the foreman I started talking with him
about the sloppiness of his work. My friend joined in and then several others as well who
were sitting nearby. Stern words were exchanged but nothing threatening or even unfriendly.
The foreman said, “The whole country is broken, why worry about his slight indiscretion?”
The exchange became louder, so I was not immediately drawn to the distant shouts. A few
from the group I was with began to look down the road. We all quieted down. Yelps and
screams were now clear and audible. They were coming from the side road of the hotel.
We all knew each other on this road, so we rushed to see who from among our
acquaintances was in trouble. Immediately, from the corner of the street I could see Adel
scrapping away. His large shirt was shredded and his face was cut and bleeding. He was
being pushed and pulled by several people I had seen him talking to over recent months.
We plowed in, trying to pull everyone apart. Adel was screaming that he would murder
anyone who touched him. I grabbed him, but he was too strong. Several others quickly
joined me, and we practically lifted Adel and threw him on the ground; we collected
ourselves and gathered around him, trying to form a barrier.
He charged at us. We blocked him. I was screaming at Adel, trying to bring him back
from wherever his mind had wandered away to. He was not calming down. Instead, he
pretended to walk away only to run around us to get back into the scrap we had managed
to rip him apart from. This time when we peeled him off we were angry from taking
blows from Adel and the others, and our bodies were full of adrenalin. We pinned Adel
against a wall, letting him expend his energy as he tried to fight us off. He was shouting
and swearing, and so were we.
As the others were dispersed I could hear indiscriminate insults and threats made
against Adel. Briefly, this brought his rage back to life. We pinned him hard this time,
almost slamming him against the wall. As the tension eased and everyone started to
return to their shops and groups of friends, I made Adel go for a walk with me to try to
calm him down and find out what happened. As we wandered along the streets in the dark
of the evening, Adel explained how he had been borrowing money from the men he was
fighting against. He had told them of a business deal he was concocting that required
several hundred dollars. There was no business deal, though. He had been using the
money on things his family required. He knew there would be trouble down the line, but
he felt he had no options. Once he had calmed down and we had both finished with the
stories, admonishments, and regrets, Adel returned to utterances he had repeated on
many occasions to me: I’m not made for this world. I just can’t make it.
In the winter of 2009 I was sitting outside the hotel’s restaurant, waiting for Adel to
appear for his evening shift to joke and chat with him. Your friend is not coming back,
Abu-Ali said, and this with a smile. He was told to stay at home. “What happened?” I noticed
that Adel had signed in yesterday when he had not shown up for work and told the owner. He
said that shit was never to come near the hotel again. “When did this happen?” Just now. I
was looking at the book and saw that he had signed for yesterday, today, and tomorrow. . . . I
took it to Abu-Shadha and that was that. That evening I saw the hotel owner, who I would
usually have breakfast with on the rare occasions when he would be in Basra. I asked if
there was any chance of his reinstating Adel. None at all.
Adel had a stall in one of the larger markets in Basra, though he would rarely keep to
one location. By a stall I mean nothing more than a blanket on the ground with whatever
bits he was selling. The next day I looked for him in the various markets in the center of
Basra and could not find him. One of the men Adel was constantly fighting with in souk
al-haraj was packing up for the day. I asked of Adel’s whereabouts. He swore at Adel,
calling him a thief. None of this was helpful. After a week or so had passed even the
workers in the hotel were asking of his whereabouts. What struck all of us in our conver-
sations about Adel’s plight was that even in his poverty he managed to have three of his
children at university and doing well—a feat that nobody was able to match among the
hotel workers. Even some of the richer guests’ children had not managed the necessary
grades that would enable them to attend the better universities in Iraq such as the Uni-
versity of Basra.
Adel lived in an area of Basra called “khamsa meel”—literally, “five miles”—so called
because it is located approximately five miles from the city center. One of the poorest
districts in Basra, it is a place outsiders rarely enter. One day I had a funeral to go to in
the area with a few of the hotel workers. We decided that it was a good opportunity to
find out Adel’s whereabouts. Within half an hour of searching, a few people had told us
of an area where we could find his wife and family. We haven’t seen him for a while. He’s
nowhere. How am I supposed to raise his children? What disaster has God thrown on my
head? . . . I walked away in the midst of the shouting. As we were returning, Abu-Latif,
from the back of the car, muttered: If you worry about this family then there are others, and
others still. . . . We can’t even look after ourselves. . . .
Adel was gone. He was not the first to simply go missing in postinvasion Iraq. He was
not the last, either.
B E I N G - I N A N D FA L L I N G - O U T
How is someone able to fall out of the world, as Adel did? If being is being-in-the-world,
and being-in-the-world is not a contingent fact about human being but is ontologically
primordial, and if, as Tim Ingold (2007) has so evocatively argued, life is to be thought
CONCLUSION
NOTES
I am very grateful to both Veena Das and Clara Han for their helpful comments and encour-
agement. I am particularly grateful to Clara for her eagle eye and the time she spent on this
piece, which improved it immeasurably.
1. Or take, for instance, Oliver Sacks’s account of the insights that injury and ill health
afford into life itself: “I found the abyss [caused by “an injury with peculiar effects”] a horror,
and recovery a wonder; and I have since had a deeper sense of the horror and wonder
which lurk behind life and which are concealed, as it were, behind the usual surface of health”
(1984, ix).
2. Though there are many senses of the Arabic word sheikh, in this chapter it will be used
only to refer to the head of a tribe (‘ashira).
3. Because of the violence in Basra and the instability of the region, from 2005 until
the end of 2008 there were hardly any guests at the hotel. At that time staying in a hotel in
Basra suggested that one was not a local and possibly that one had money, which made
one susceptible to the risk of being kidnapped. The few guests that were in the hotel tended
to be there on long-term business projects. The hotel has thirty-eight rooms of various sizes;
until 2009, I did not know of more than eight rooms ever being occupied by guests at any one
time.
4. The arb’eeniya or “fortieth” is the forty days’ remembrance of ashura, in which the Prophet
Mohammad’s grandchildren and their followers were killed in the great battle of Karbala.
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CA: Sage Publications.
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Pain as Human Experience: An Anthropological Perspective. Berkeley: University of California
Press.
Dilley, Roy. 1999. The Problem of Context. New York: Berghahn Books.
Frank, Arthur W. 1995. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University
of Chicago Press.
Ingold, Tim. 2007. Lines: A Brief History. London: Routledge.
Irving, Andrew. 2004. “Life Made Strange: An Essay on the Reinhabitation of Bodies and
Landscapes.” In Qualities of Time, edited by W. James and D. Mills, 317–31. ASA Monograph
41. Oxford and New York: Berg.
Jackson, Michael. 2004. Existential Anthropology: Events, Exigencies, and Effects. New York:
Berghahn.
James, William. (1902) 2002. Varieties of Religious Experience: A Study in Human Nature.
London and New York: Routledge.
Kleinman, Arthur. 1988 The Illness Narratives: Suffering, Healing, and the Human Condition.
New York: Basic Books.
Last, Murray. 2007. “The Importance of Knowing about Not Knowing.” In On Knowing and
Not Knowing in the Anthropology of Medicine, edited by E. R. Littlewood, 18–39. Walnut
Creek, CA: Left Coast Press.
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Social Structure. London: Athlone Press.
Murphy, Robert Francis. 1987. The Body Silent. New York: H. Holt.
Sacks, Oliver W. 1984. A Leg to Stand On. New York: Summit Books.
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versity Press.
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in Medical Thought and Practice, edited by D. Leder, 127–37. London: Kluwer Academic
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Wright. New York: Harper.
The duration and oscillating intensity of the Israeli–Palestinian conflict have meant
that events of death and detention have become woven into the fabric of everyday life for
most Palestinians. Many earlier studies of the conflict focused on how these events were
voiced, as well as on the ways in which the suffering they entail was palliated by recourse
to a language of collective struggle for Palestinian statehood (cf. Peteet 1991; Jean-Klein
2001; Allen 2006, 2008, 2009, 2012; Asad 2007; Khalili 2007). In recent years, however,
this language of politics, resistance, and endurance seems to have lost some of its
force and cannot encompass the full spectrum of experiences of loss brought about
by occupation, not least in intimate relations in the occupied Palestinian territories
(hereafter OPT).
Based on ethnographic fieldwork in the OPT conducted between 2007 and 2011, this
chapter presents two different examples of loss caused by the ongoing, violent conflict. I
compare the conjugal loss experienced in the case of widowhood with another instance
of loss in which the consequences of detention reverberate over other family members
but whose effects cannot be easily voiced or acknowledged publicly. I also argue that,
unlike the language of trauma through which public-health literature registers the expe-
riences of relatives and detainees, people are at a loss at giving expression to these expe-
riences in everyday life. Therefore, such experiences tend to be placed outside language
and at times even in the delicate register of madness. This failed attempt to bring forth
experiences in available languages registers painfully how the occupation splinters the
Palestinian territory as much as the hearts and minds belonging there. I anticipate the
475
thought that calling something and someone “mad” may tell us how maddening the
circumstance of occupation is experienced to be.
In the first case I offer from my fieldwork, the cultural nuances through which the
maddening effect of violence is gestured at are experienced directly by the widow of a
martyr. In the second case—that of a mother and a daughter of a detainee—mental dis-
order is admitted to but not acknowledged by the audience invited to witness how the
toxic effects of the occupation permeate the whole fabric of relations. The latter case
opens the equally toxic discussion of how prolonged suffering might erode the capacity
to offer mutual sustenance.
The argument developed in this chapter is that not all suffering can be equally well
articulated or, as Veena Das would say, can find a home in language (1998, 183). Whereas
death in the shape of martyrdom appears to be integrated into discourses emerging from
shared criteria, other residual effects of the occupation, such as mental disorders and the
fracturing of intimacy caused by prolonged detention, are not easily expressed or explic-
itly acknowledged. Some twenty years after the interim agreements in 1993, “resistance”
seems to have lost its allure (Segal 2013, 128, 129). The cases that I present will, I hope,
demonstrate the different ways in which occupation becomes absorbed within particular
scenes of intimacy related to experiences of loss. I ask how forms of loss are mourned
or whether they are even allowed to be mourned at all. I hope thereby to track the conse-
quences of the occupation as they become part and parcel of everyday life and ways of
being intimate.
Finally, I want to suggest that there is another register of loss—which I tentatively
term loss of politics. I am not suggesting that people have renounced any engagement with
politics but that there is an exhaustion with registering and mourning every loss (Kelly
2009). While violent death still causes people to mobilize and express anger at the polit-
ical situation, less grievous forms of loss increasingly fail to register as they are absorbed
within everyday life—not quite normalized, but not worthy of public acknowledgment,
either. In her book The Rise and Fall of Human Rights, Lori Allen writes convincingly that
this exhaustion has occurred in the maelstrom of Palestinian NGOs that are engaged in
the burgeoning human rights industry at the very same time that they witness the com-
plete absence of improving basic human rights in the relationship between Palestinians,
the Palestinian National Authority, and the State of Israel. The result of this, argues
Allen, is a sense of cynicism across “Palestinian human rights defenders, abusers, vic-
tims, critics, and observers alike” (Allen 2012b, 2). Whereas I recognize cynicism from
my own fieldwork among NGOs, the feelings conveyed in the cases presented in this
chapter seem to me to belong to a tragic rather than a cynical register. Nonetheless, I
follow Allen by suggesting that even words for political resistance appear to have lost
their force by dint of repetition. They are still uttered, but they ring hollow—so loss of
politics is a loss of hope for a temporal horizon in which one’s form of life, following
Wittgenstein, may actually have a future in language (Buch 2010; L. B. Segal 2014a; Das
1998b, 174).
Let us first consider the meaning of loss within conjugal relationships in Palestine. The
punitive practices of occupation have resulted in profound losses of intimacy to the extent
that we could say that what has been lost is a way of being together within the different
modalities of married life (L. B. Segal, in press A; P. Johnson et al. 2009). In the felicitous
words of Aaron Goodfellow (2008, 17), a loss of a sexual relation might become so pro-
found as to constitute “a passing of a way of being in the world.” I contend that for Pal-
estinian women, the loss of their husbands to martyrdom and/or imprisonment in Israel
is precisely such a passing of a whole way of being rather than simply the loss of a par-
ticular person. In the two ethnographic cases that I present, I try to show what it means
to keep on, to endure—holding on to everyday routines even when life has been, as it
were, drained from the everyday. Whereas this ground has been well covered by scholars
of the OPT, there is a tendency for such accounts either to emphasize the Palestinians’
preternatural ability to wrest agency from the direst of circumstances or to let the
undoubted suffering occasioned by the conflict obscure the fact that life is, as Tobias Kelly
(2007, 5) puts it, something “else than blood and violence.” Here, I show how the simul-
taneity of endurance and loss unfolds for women in two different situations that, on the
surface, look similar and yet, on the level of experience, hold out different promises of
what it means to endure and how endurance is actually lived. What I wish to specifically
emphasize is that the cultural repertoire of mourning is not able to encompass the expe-
rience of all form of loss and that there may be room to think of grief as separate from
the loss that can be given expression through available forms of mourning.
Analytically, the tonality of this chapter is that of Das’s work on the relationship
between violence and everyday life. In particular I take my cue from her subtle analysis
of how some forms of suffering challenge the idea that all forms of violation can be
“voiced.” I concur with her on the need to acknowledge how violence has splintered
everyday life in the OPT and yet at the same time worked itself so deeply into it that
violence itself has become ordinary. Toward the end of the chapter I shall use Das’s writ-
ing more explicitly to ponder the experiential difference between mourning and grief in
the face of the two different kinds of conjugal loss I describe here.
L O S S I N PA L E S T I N E
Historically, the occupied territory is a highly problematic site for understanding loss. A
brief historical outline will be in order here to convey how the unsettled national bound-
aries in the area are interlaced with the violence of everyday life in Palestine. In one of
her recent essays, Das (2010) argues that the way in which events are told and retold is
intimately linked with the construction of people as ethical subjects—in this case, national
subjects. Thus, the way in which a given narrator relates the history of Israel and the
Palestinians gestures at the kind of ethical being he is striving to be in the context of the
Luma had a rash on her stomach. She complained about it every time my assistant, Mayy,
and I saw her. Since we could neither see nor diagnose the rash, we urged her to see a
doctor. Luma did not go. Paying a martyr’s widow the respect she was due, Mayy had
kindly proposed that her own father, a famous physician in this particular West Bank
town, have a look at it. When a few weeks later Luma had still not visited Mayy’s father’s,
we told her one Friday morning that instead of coming by for a cup of tea as usual we
would pick her up and drive her to the clinic. Luma hesitated, but got into the cab happy
that two women were escorting her; that way, neither her neighbors nor her family could
witness her disappearing into a car with an unknown driver. We entered the doctor’s
practice, naturally quiet and empty on a Friday. Luma insisted that Mayy and I join her
in the consultation room. We were all quiet, and the doctor gestured at Luma to lie down
and lift her dress so that he could see the rash. There was nothing to see. Luma, however,
insisted that it itched, and he prescribed some cream (perhaps cortisol). Luma gratefully
thanked the doctor, and we drove back to her house, where we drank coffee and watched
a video recording of her daughter’s fifteenth-birthday party.
Luma is a physically imposing and stentorian woman. Her laughter does not go unno-
ticed, and when she cries her tears are, as she makes clear, a sign not only of her sorrow
but also of her achievements in coping with her situation as the widowed wife of a mar-
tyr and the single mother of four teenage children. It is through tiny everyday gestures
that Luma conveys how she has managed to thrive in adverse circumstances. For
instance, when we first visited her house, she made a point of offering my assistant and
me two different kinds of homemade cake rather than shop-bought cakes from just next
door. Similarly, she threw a fancy party, inviting her nieces and female acquaintances,
when her daughter turned fifteen. One of the most important things about the party was
that it later allowed her to show and narrate at length a video recording of it to willing (or
unwilling) guests. From conversations with her and with women she knew both directly
and indirectly, it is clear to me that her gestures of both resilience and lamentation are
seen by others, and indeed by Luma herself, as those of an understandably nervous
woman.
The pain associated with the violent death of her husband hovers over Luma’s life and
underwrites her expressions of both mourning and coping. In 2002, at the height of
intifada al-aqsa, Luma’s husband died in an air raid in the vicinity of their house. Luma
heard the bombing, aware that her husband was its most likely target. Though it is now
ten years since his death and she could remarry without any social censure, as other
widows have done, Luma refuses to do so.
YA R A : FA I L I N G TO K E E P G R I E F AT B AY
Yara is the wife of a politician who is serving a life sentence in Israel. He has been detained
since 2001 and was put in isolation at the time of my fieldwork. In Yara’s narrative of her
G R I E F, M O U R N I N G , A N D T H E L O S S O F P O L I T I C S I N P A L E S T I N E
The cases of Luma and Yara illuminate how the death or indefinite absence of a spouse
suffuses all relationships—so that the sadness that women express over such loss is about
losing a whole way of being in the world. As the event of the loss of a husband unfolds
over time, it looses its place as the definitive event of sadness in a marriage in contem-
porary Palestine. Yet there are important differences in the cases of Yara and Luma. For
Yara, the losses she has had to endure are not easily expressed or recognized within the
repertoire of stories of loss that women tell in Palestine. Thus one might say that they
lend themselves niether to the process of mourning nor to the relief that mourning can
potentially bring. To the martyr’s widow Luma, the languages of mourning such as her
lamentations allow a space in which she can give expression to her love and her desire
for the husband who died prematurely. Thus she can both inhabit and admit to feelings
of love and desire in a way that is socially accepted insofar as these feelings are directed
toward her deceased husband.
In Yara’s case there is no available language for expressing the grief that invades her
being, for it includes not only the loss of her husband but also the doubt in the roles she
has filled and still does fill in the Palestinian political community: Yara as a female ex-
detainee and the proud wife of a hero. We saw the divided self in the sense of how she
publicly continues to speak on behalf of the Palestinian cause while also reflecting on
what her daughter and she have had to endure at the cost of her famous husband’s heroic
imprisonment. For the Palestinian population as a whole that continues to bear the daily
hardships that result from the imprisonment of such a large number of men, the prison-
ers’ problem is too sensitive to allow for any story to emerge other than that of equally
heroic endurance. This is why the audience at her talk was silenced by Yara’s account of
her personal experience of her husband’s imprisonment.
In private conversations Palestinians will tacitly agree now that the golden era of Pal-
estinian resistance to the occupation is but a faint memory from the first intifada. The
language of resistance, however, still figures as representing collective hope for Palestin-
ian freedom from occupation. People staying in Palestine have no option but to act as if
they still believed in a collective future, but the worlds with which collective hopes are
narrated are now emptied of life (see L. B. Segal 2014a).
CONCLUDING THOUGHTS
How can these two cases of Palestinian women’s contradictory emotions on the death or
imprisonment, respectively, of their husbands push our thinking further about loss,
mourning, and grief? Let us first ask, What work does language do here? There is an
elaborate repertoire of narrative styles, laments, folk song, poetry, and performance of
bodily gestures through which mourning (including the mourning that is tied to a
political cause) can be articulated in Palestine. Why are these collective forms of expres-
sion found wanting in the cases of detainees’? As stated, it seems to me that the problem
hinges on the question of temporality. Although the death of a significant other is a griev-
ous event in all cases, it tends to be contained within a bounded period of time. The
process of mourning the dead is ritually structured, and although the personal time of
grieving is not identical to the ritual time, the latter sanctions a societal recognition that
N OT E S
This research was made possible by the Carlsberg Foundation and the Consultative Commit-
tee for Development Research (FFU) in Denmark. First of all I want to thank the women
figuring in this chapter for sharing and wording their lives with me. Second, I am immensely
grateful for the careful and constructive comments by Veena Das and Clara Han. You have
been remarkable as editors and helped the chapter flow when I could not push its argument
any further. For copyediting the chapter Matthey Carey and Rachel Taube have both been very
helpful. As always the invisible hand of Andrew Brandel makes all the difference.
1. Though South Africa’s struggle against apartheid and the Palestinian struggle against
Israel are often compared (cf. Farsakh 2005), the widows of Palestinian martyrs—contrary to
Ramphele’s (1997) analysis of the widows of South African freedom fighters—are not ambig-
uous figures.
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Clara Han
Recent social science literature on urban poverty and social inequality in Latin America
has emphasized the spectacularity and pervasiveness of violence that has arisen in concert
with growing social inequalities during the region’s democratic transition. In studies of
what is termed the new violence—affirmed by the key figure of rising homicide rates—
social scientists have portrayed low-income neighborhoods as steeped in and largely
defined by violence, a cluster of conditions involving urban gangs and criminal networks,
forms of police violence, and urban poverty (Arias 2006; Arias and Goldstein 2010;
Benson et al. 2008; Koonings and Kruijt 2007; Rodgers 2006; Wilding 2011). In a lit-
erature where violence is largely assumed to be immediately knowable and transparent,
individual narratives of violent death become constructed around gang loyalties, state
abandonment, and stories of revenge (Auyero and Burbano de Lara 2012; Goldstein
2003). In this persistent focus on normative ordering, however, we might appreciate the
difficulty of coming to grips with a pervasiveness of death that is real. How might the
individuality of death relate to the pervasiveness of death? Does an engagement with this
individuality provide a way to recast these dominant narratives of cycles of revenge, thus
helping us attune to the everyday endurances in and around violence in low-income
neighborhoods?
In this chapter, I attend to one woman’s grief and experiences of loss in relation to the
violent death of her son in El Zanjón, a low-income neighborhood in Santiago, Chile, under
military police occupation.1 In May 2012, I began nine continuous months of fieldwork in
this neighborhood, followed by visits in 2013 and accompanied by chats over Facebook and
49 3
Skype. Several months before I met her, Martita’s son, Camilo, was killed by a police func-
tionary during a drug raid performed by the Tactical Reaction Team of the civilian Police
Investigations [Equipo de Reacción Táctica, Policia de Investigaciones]. Her youngest of
three sons, Camilo was twenty-two years old when he was killed and was expecting the
birth of his first child, a daughter, with his girlfriend, who at the time of his death was eight
months pregnant. In the early days of my visits with her, Martita recounted to me the pain
she experienced on coming into a deep awareness of the reality of her son’s death: “I have
begun to live my grief because I realized things that before I did not realize. . . . I became
aware of the reality that, whatever I do, no one and nothing will return my son. Nothing.
So, that is what has me tormented. I feel mal. The only thing I need is help to help me feel
‘Why live?’ . . . They say that this [grief ] is normal, but I am learning to live it.”
In her remark “They say that this is normal, but I am learning to live it,” Martita
expresses the sensibility that despite the pervasiveness of death, death—from the perspec-
tive of the singular other—does not become normal. Learning to live grief is learning it
anew, for each and every death. Let me bring Martita’s words into conversation with the
words of anthropologist Veena Das and philosopher Stanley Cavell. In the forward to
Das’s Life and Words, Cavell cites a remark of Wittgenstein’s that he (Cavell) “imperfectly,
or only intermittently” understands, but that he says Das’s text surely illuminates: “The
whole planet can suffer no greater torment than a single soul” (Cavell 2007, xiv). At stake
for me in Das’s text is what it helps me hear in Martita’s words: “But I am learning to live
it.” We are asked to attune to how every death is mourned, and in so doing to pay attention
to how “the same space now marked as a space of devastation” is made into one’s own
again (Das 2007, 62). Such an engagement with the singular other, in which we “remain
mindful of the projecting character of human existence (Das 2007, 62),” allows us to
attend to the possibilities forged in and through loss. In this chapter I ask, What might be
the experience of death in a world in which death is pervasive? How do endurance and
loss interweave in this context? One of the core arguments of this chapter is that such
questions simply cannot be responded to independent of an engagement with the singu-
lar other. Listening to grief, in this sense, asks us to listen to the torment of a single soul.
T H E C O N T E X T O F O C C U PAT I O N
Before turning to Martita, let me briefly provide a context for the current occupation.
When I began fieldwork in El Zanjón in May 2012, the neighborhood had been under
military-police occupation for several years. In 2001, the Chilean Ministry of the Interior
enacted a policing scheme called “Barrio Seguro,” or Secure Neighborhood, that focalized
intensive policing to sections of poblaciones, or low-income neighborhoods, understood
to be sites of drug trafficking and delinquency. Although resonating with the long-
standing policies of targeting social programs to geographic territories—such as in the
case of programs for extreme poverty—Secure Neighborhood was not initiated on the
basis of evidence that demonstrated certain neighborhoods to be foci of drug trafficking
4 94 • CLARA HAN
and delinquency. Rather, it was catalyzed by publicity around the funeral of a young man
from La Legua, a neighborhood known for drug trafficking in the media and popular
imaginary. A major national newspaper, El Mercurio, covered the funeral in the General
Cemetery, at which the aunt of the young man was said to have presented herself to the
newspaper as “the queen of pasta base” (a cocaine-based drug) and to have intimated
seeking vengeance for the death of her nephew.
The story spurred the subsecretary of the Ministry of the Interior to issue criminal
charges against this woman for issuing a public death threat and to reassert the rule of
law in Chile to the press: “There is no territory in Chile where the rule of law is not in
force, and the law of Aunt Nena is not in force in La Legua, the law of Chile is” (“Jorge
Correa Sutil” 2001). Intertwined with references to the criminal underworld with terms
like hampa (“riffraff ” or “scum”) and clan in this story and multiple stories that rapidly
appeared in the days following, kinship was cast as a threat to sovereign power. Within
four days of the story’s publication, the Ministry of the Interior authorized the first police
occupation of a low-income neighborhood in Santiago.
This police occupation was replicated in a handful of small neighborhood sections
known in the popular imaginary as sites of drug trafficking and delinquency within the city.
Only later did sociological and public-policy publications lend coherence to these occupa-
tions, casting them as “necessary” interventions to bring these “territorially stigmatized”
and “ghettoized” neighborhoods back into the normative social order (Cornejo 2012; Früh-
ling and Gallardo 2012). In El Zanjón, identity checkpoints by the Carabineros—a branch
of the military police responsible for street patrol—were established on each passageway
that served as an entrance and exit; Special Forces were brought in as a fixed point within
the neighborhood to deter the open sale of drugs and to act as backup in drug raids; the
GOPE, the Special Police Operations Group, rounds the street in armored vehicles; and the
civilian Police Investigations (Policia de Investigaciones de Chile) Anti-Narcotics Brigade
and Tactical Response Teams conduct drug raids. Often involving several dozens of police
functionaries, these raids are authorized by judicial orders secured by the public prosecutor
and authorized by judges through a grounding in the 2005 Drug Law. It was during one of
these drug raids that Martita’s son was killed.2
A WORLD LOST
Martita and I sat in the storefront built into the patio of her house. We looked out across
the iron gate into the bright sun that warmed the dusty street. Children made loops on
bicycles while women walked up and down the street buying food to prepare for lunch.
The neighbor’s ten-year-old daughter swung by on her bicycle with her big smile and
chirpy voice: “Hola, Señora Marta!” Women glanced into the storefront to greet Martita
and cheer her on: “Ánimo, hijita [Keep on going!].”
Camilo was the last intimate kin to live with her in the house. After Martita’s separation
from her husband the year before Camilo’s death, she and Camilo had worked together
ECHOES OF A DEATH • 49 5
to build a successful business selling fast food—pizzas, sandwiches, hot dogs—in the
storefront. “Pizza—600,” “Completos (hotdogs)—250” in adhesive lettering on the wall
framed an empty fridge for soft drinks and a clear plastic box still full of hard candy and
lighters. When I stopped by to visit, Martita had just gotten out of bed and it looked as if
she had been crying. I asked her lightly how she was doing, and told her that if she was
feeling unwell I could come back another time. She responded that she was remembering
her son, and insisted that I stay. She began, “Look, everyone in the world said that the
reason for living was hearing Camilo’s laugh in my house. He filled my entire space.”
As she continued to talk, descriptions of Camilo were interspersed with her descrip-
tions of the moment he was killed, itself an intersection of other contexts and other lives
and deaths. Many of these contexts were not available to me on the day that I sat with
Martita, and became available only as I continued to spend time with her, her sister, her
other sons, and their families.
The afternoon Camilo was killed, Martita had gone to her older sister Lola’s house.
Four years earlier, Lola’s husband had been killed inside his house when gunfire between
rival gangs ripped through the wooden house where they lived with their son. Lola’s inti-
macy with her husband was one in which sexual desire and violence were tightly knotted
together, and was marked with multiple attempts at separation initiated by Martita, the
police, and family courts. Upon the death of her husband, Lola fell into what Martita
alternatively calls “a grave dementia” or “a terrible depression.” She stopped bathing, did
not change her clothes, talked little, and chain-smoked day and night. For several months,
Lola was interned in the Psychiatric Hospital, and despite minimal improvement, she was
released into the care of her sister. (Neighbors simply called Lola “mad,” but this madness
was accommodated in the everyday life of the neighborhood in various ways.)
As she did every day, Martita was visiting Lola to urge her to bathe herself and to pro-
vide Lola’s son with a portion of lunch. The raid began when she was at Lola’s down the
street. Several trucks of Police Investigations functionaries dressed in black combat gear
and face masks entered the neighborhood. Throwing tear-gas bombs, they raided several
houses and detained suspects. As the chaos subsided, Martita heard her neighbors yelling.
Her son had been found, shot, and killed at the entrance of their house. She reflects:
I never imagined that a thing like this could happen because we always conversed. This
door is reinforced [steel] and you have to close it [a large sliding door to the storefront].
When there was a gunfight [balacera], we closed it and we were inside [the house] when
they were firing [their guns]. Or if he was alone, he would have to just close it, or if I was
alone, I closed it and always went inside. . . . And just that day, I left him alone, so from
the beginning, I felt feelings of guilt: “Why did I leave him alone?” But I had left when he
was still in bed. When the police arrive, everyone yells, and also when they leave, “They
left!” So, he had to go have lunch with the girl [his girlfriend] who was waiting for him.
Because of that, he got up from bed. When he heard the yelling “They left!” he opened the
door to stick out his head to see if he could leave, and he was shot, and he fell right here
4 96 • CLARA HAN
inside. I don’t know. I feel that they have killed me, too. They killed a part of me. . . . Never
in my life did it pass through my mind to live something like this, because we protected
him so much. Sometimes, when there were fights, I would call him. “Son,” I would say to
him, “do not let it even occur to you to come here. They are fighting outside [on the street].”
“Ok, mamá.” Afterwards he called me: “Mamí, are they still fighting?” And I told him, “I
will call you when it’s tranquil.” That’s how we lived, that’s how we communicated.
Drug raids and crossfire are neither dramatic nor exceptional; they are part and parcel
of everyday life in this territory. Understanding this violence as part of the ordinary allows
us to pay attention to the common sensibility that life is held and protected through the
quotidian actions of “communicating” and “conversing” as well as Martita’s sense of guilt
that arises simply from the efforts in attending to other kin. “Communicating” and “con-
versing” are what one has at hand to protect and hold a life, and this thought can be mad-
dening. As Martita says, “Never did it pass through my mind,” “I never imagined a thing
like this could happen.”
But conversing and communicating also matter for a different sense of staying alive,
in holding together a shared life: of life acquiring its life. When Martita spoke of her son,
she spoke in the form of a conversation with him, as if recounting their life together was
a recounting of the conversations that they shared. Each moment of acknowledging his
death turned into a recounting of this sharing. Her recounting of how visiting the cem-
etery spurs her memory of “the entirety of him, his body” transfigures into a conversa-
tion in which Martita tries to persuade Camilo not to get a tattoo. Her recounting of her
gesture of kissing his photo each night transfigures into their quotidian acts of a kiss
good night and a morning greeting.
I come in, I come out [of the house]. I don’t encounter meaning for my life. . . . I have this
photo here [a large poster-size photo of Camilo that says, “You will always be in our thoughts”].
Every night I give him a kiss and say, “Bye, my son, I love you, you know that I have you . . .
[fades].” Until sixteen or seventeen years old, he asked me permission to go to bed. After he
started to date, he stopped doing that, but the kiss every night was sacred. “OK,” he would
tell me, “I am going to bed. Bye. A kiss. Wake up well.” “OK, son, thanks to you, too, and you
too wake up well.” In the morning, “Hi! How did you wake up?” And with his laugh. On
Mother’s Day, his was the first kiss that I received since we lived here together, us two.
ECHOES OF A DEATH • 49 7
not only show what losses fall under the normative idea of a mother’s grief—a loss that
can be told and publicly acknowledged—but also show how the death of Camilo impli-
cated the loss of a way of being in the world: the intimacy of companionship.
Here, let me turn to Martita’s separation from her husband to show how the event of
Camilo’s death resounded through her intimate relationships and entailed new estrange-
ments. As Martita recounted to me over several different occasions, her husband, Pedro,
had led a “double life” for several years that she suspected began when she was pregnant
with Camilo. Over the course of time, his other life began to bleed into their life. Hints
of the other lover appeared in his actions and increasingly drove her to what she calls
“depression” and a resulting facial paralysis on one side of her face that she has had since
Camilo was a small child. Pedro would insist that she sleep on the couch rather than sleep
in bed with him because of her snoring. She suspected that he took tea at his lover’s house
before returning home to take evening tea with her and the children, as he hardly had
any appetite when he returned from work. The lover eventually appeared in a letter
addressed to Martita, which her older sons opened and read, making her experience
intense humiliation. Without providing the name of the sender, the letter recounted the
life that Pedro and his lover had made together. Yet Pedro continued to deny the existence
of the lover to her, saying that the letter was a fabrication. Because the letter had no name
to attach to it, it became a ghost that circulated in their relationship.
Their relationship became one of small insults that accumulated—an accumulation
that Martita called “la mochila” (“the backpack”), the weight that she endured. Pedro
wounded Martita with petty words. Martita recounted to me multiple times one specific
scene that seemed to crystallize this wounding. Pedro was disgusted by aging and
expressed his disgust in the physicality of growing old by constantly harping on the smell
of her father’s aged body. Yet Martita prided herself on the care she took of her father,
through which his dignity remained intact. It was Christmas. Martita had readied the
house for the family dinner: wiping down the ceramic floor with chlorine bleach, decorat-
ing, and cooking. The dinner was ready and the table was set. Her older sons were going
to show up shortly, and Camilo was sent out to get some soft drinks. When Pedro arrived,
however, he said with great irritation, “Why does your dad always have the smell of feet
[olor de pata]?” When Camilo returned minutes later, he found Martita in the bathroom
weeping. He asked her why she was crying, and she told him, “Your father told me that
your grandpa smells of feet.” By this time, Camilo was around fifteen years old. He con-
fronted his father, who was sitting at the dinner table: “Why did you say that to her? It’s
cloro that you are smelling.” An argument ensued. Camilo pushed his father out of the
house, locking the gate behind him. Martita recounts that this was the first time that
Camilo had stood up against his father, and it propelled Pedro to move out of the house,
although they continued to consider themselves married.
The year before Camilo’s death, Martita bitterly separated from Pedro. She stopped
receiving financial support from him, and he stopped counting on the use of her car to
4 98 • CLARA HAN
go to work as a bus driver. Yet her eldest son, Luis, refused to acknowledge the separa-
tion. And, despite the deep rancors, every Sunday, Martita continued to prepare the fam-
ily meal together in the house that Pedro had moved out of, everyone partaking in the
concealment of a separation they knew had taken place.
In the months after Camilo’s death, the affects surrounding the separation took on a
different valence. With the deaths of her mother, father, older brother, older sister, and
now Camilo and with the move of her two eldest sons to other low-income neighbor-
hoods far from El Zanjón years earlier when the occupation had just begun, Martita
would often say that she and her surviving sister were the “only huachas” (“orphans”) who
lived in El Zanjón, since it indeed seemed that almost everyone else in the neighborhood
was held, for good or for ill, in the webs of living kin. Her eldest son’s wife, Allegra, was
not unaware of Martita’s solitude in El Zanjón and called her every day without fail, often
attempting to persuade her to spend time with them in their house. Yet as Martita said
to me bitterly after a long conversation with Allegra in which she learned that Pedro
would also come to a barbecue at her son’s house, “I played the clown for so many years.
Now that they killed my son, that moment is past.” In breaking that concealed past into
the open, the event of violent death allowed Martita to claim this past rather than be a
hostage to it. Yet that claiming simultaneously estranged her from relationships with her
intimate kin.
L I F E B E T W E E N T W O D E AT H S
Camilo’s room had been left just as he left it that day, with stacks of Pampers baby diapers
piled up in the armoire next to the television set, his bicycle leaning against the wall, a
T-shirt hanging from a hook where he left it, and above the bed a large purple and pink
banner with figures of balloons and teddy bears that said, “Welcome,” in anticipation of
the baby to be born. A thick layer of dust had settled across his things, as with the rest of
the furniture in the house. Martita struggled with that lifelessness, to be with it and in it,
and to not be in it. These struggles, in turn, implicated a wider set of relationships in
which she was enmeshed. But because of these very struggles she found herself at times
estranged from these relationships. Blondie considered Martita to be her closest friend
and the “mother I never had.” In her late thirties, Blondie lived down the street with her
partner and her children from a previous relationship. Starting as a street vendor, she
eventually established a storefront bazaar where she sold goods ranging from children’s
toys to paper and pencils, detergent, and shampoo. For years, Blondie and Martita had
called each other every day to chat and laugh.
In a gesture of helping, concealed as needing help, Blondie pleaded with Martita to take
over the chore of picking up her children from school. As she told me, she made up the
excuse that she was so busy working in her bazaar that she couldn’t get away. Giving
Martita this daily chore meant that Martita would necessarily have to pass by Blondie’s
house to pick up the children, and thus Blondie could invite her in for lunch and tea.
ECHOES OF A DEATH • 49 9
Blondie, too, saw “communicating” and “conversing” as a way of staying alive. Yet
although Martita did eventually spend time with Blondie and took pleasure in Blondie’s
stream of wisecracks and impersonations, she would grow uneasy and restless. “I have to
go my house. My house is calling me,” she would say to Blondie. Later, she would com-
ment to me with some exasperation, “It’s just that Blondie is very absorbing. I need to live
my reality, now, here.”
Like many row houses in El Zanjón, the only natural light that came into the house
was from skylights cut into the roof. But because police often pursue young men on
rooftops, the skylights were broken and covered with boards. During the day, the house
was completely dark but for electric light bulbs, and one had little sense of the time pass-
ing. Martita’s bedroom was pitch-black, and she could spend days in bed. During one of
those very dark moments when she could not get out of bed, she expressed to me her
fear that her death would give even more pain to her living children, conveying this fear
in terms of both the accumulation of deaths in her life and the specificity of Camilo’s
violent death.
I feel like a grandma because it’s hard for me to walk. The weight that I feel in the body: it
is a very large weight. I came standing up [venía parando, conveys having endured] from
the death of my dad and my sister who were carried [to heaven] within five months [of each
other]. And now this happens to me. My father died, my sister died, and I separated. Three
losses together. And I remained with him [Camilo]. . . . And, well, not a problem, because
these were deaths that I had to overcome. But I do not think that I will overcome this
[Camilo’s death], not even if I am very faithful [in God] or if God helps me. . . . I told my
husband that my soul hurt when my dad died. And my husband said that the soul does not
hurt [that the soul is incapable of feeling pain]. And now I tell him, “Now what happened
with Camilo, do you understand what I said to you? Because according to you that day, the
heart does not hurt.” . . . There remains only me and my sister who comes to see me, and
I say, overall, it does not scare me to die in the manner that it happens and when it happens.
As I told you, look at the deaths that I have, but I know that it will cause pain for my sons
[if I die]. My sons were the fathers of Camilo. They loved him as fathers. The respect that
they had between themselves. It scares me to become more ill than I am already, of pain.
Because there are people who have died of pain.
In his essay “The Survivor’s Paradox,” anthropologist and psychiatrist Richard Recht-
man (2006) draws attention to the limitations of PTSD, not in terms of its historical
construction as a diagnostic category, but in terms of the clinical description that it renders
by focusing solely on the empirical event. Discussing the Khmer Rouge extermination and
his long-term work with patients who had experienced this genocide, Rechtman points
out that the very fidelity to the dead can cast the living into the world of death. Thus,
Rechtman’s therapeutic gesture in the clinic is to disinvest the power of the perpetrator’s
rhetoric that sought to obliterate the symbolic frontier between the dead and the living,
and in so doing, affirm that the patient is still alive. Moving beyond the bedside, however,
EXPERIENCE OF DISPLACEMENT
At the end of January 2013, I returned to Baltimore to teach, returning to El Zanjón six
months later in July. I had known from staying in touch with Martita over Facebook and
Skype that she often felt so unwell she could simply not get out of bed. As part of the
Victims’ Support Unit program, she had received six sessions with a psychiatrist, who
had prescribed Buxon (Wellbutrin) for depression, which she took alongside fluoxetine
and clonazepam. But Wellbutrin was not available in the primary-care clinic, so she took
what she could from samples gathered by the psychiatrist. When her samples ran out,
she stopped taking the medication. She then began to experience trouble walking even
one block without exhaustion. Her son Ángel paid for a private consultation with a car-
diologist, who ordered an echocardiogram that revealed a leaky mitral valve. Over Face-
book chat, she expressed relief to me that she did not yet have “el corazón agrandado” (an
enlarged heart), which comes when so much pain is swallowed and held within the body.
Within the space of a few weeks of my return to El Zanjón in July, three young men
were killed in the neighborhood, after several weeks without crossfire. Martita had known
all of the young men since they were little boys. One of the young men was shot in the
head and was in a coma for two weeks before he died. He had struggled with addiction to
pasta base, and in ambling around the neighborhood was inadvertently caught in crossfire
between rival gangs. Martita related to me that this man’s mother had been her neighbor
since her childhood. They grew up together, were pregnant with their youngest children
around the same time, and her neighbor’s son had spent countless afternoons with
Camilo, playing in the street and in their houses. While the first young man was in a
coma, the second young man was shot and killed in what was said to be a dispute between
gangs. The mother of the second young man was also Martita’s neighbor, and she remem-
bered when the little boy would run back from school with her older sons.
When I came to El Zanjón to visit Martita, police investigators were accompanying
the Carabineros, and neighbors were watching closely their every move, stopping in the
streets to observe them. There was tension in the streets; my heart was pounding. One
of the women I spent time with saw me come down the street and waved me over. She
told me that she had known the second young man since childhood; they played together,
grew up together: “Sure, he went to the ‘other side’ and all, but it still hurts, and he left
his wife and a little baby girl.” As she related to me the details of how he died, she
When I reach her house, Martita is standing in the doorway, looking onto the street. Blue
and white balloons are tied to the houses down the passageway where the young man’s
aunt lives, in anticipation of the bringing of the body and guiding it to where the velorio
would be held. The streets are still; the balloons dance in the breeze. Dressed in fuzzy
sweatpants and sweaters with a thick scarf around her neck, Martita holds onto my arm
as we walk down the street without speaking. Tears roll down her face, and she wipes
them away again and again. We reach the private medical appointment. She tells the
physician that she has not been able to get out of bed and that she has not been able to
eat without vomiting. “I just want to sleep, but I cannot sleep,” she says. The physician
is listening attentively, and asks her if this is the same as before. “Depression?” he asks,
“Yes, doctor.”
Might this withholding of the autobiographical voice with respect to the territory be regis-
tering an experience of displacement? And how might the experience of displacement allow
for a reinhabiting of the life of the neighborhood when endurance wears thin? In a sense,
Martita’s phrases—“they are not letting me return,” “the doctor still prohibits me from
returning”—allow her to experience leaving El Zanjón as an experience of displacement in
R E F L E C T I O N S : L I F E BY A T H R E A D
The cumulative effect of these violent deaths on Martita returns us to how the pervasive-
ness of death relates to the individuality of death. For Martita, these violent deaths signify
the losses of multiple being-in-the-worlds: a death entails not an abstract other’s grief,
but the grief of those with whom one has shared a life by virtue of kinship and proximity.
Here, we are asked to engage the concrete living of this pervasiveness and to understand
how it differs from the idea of the pervasiveness of death as enumerated in homicide
statistics or in the stories of “cycles of revenge,” which consign the uniqueness of being
to eternal forgetfulness. The cumulative nature of deaths is not insignificant in relation
to the individuality of death; its experiential significance arises with regard to each and
every death.
This pervasiveness of violent death is endured through the small actions of commu-
nicating and conversing that achieve everyday life. That these actions sometimes may not
be enough to hold life shows the very fragility of life in El Zanjón, expressed in women’s
words: “life is by a thread” (la vida está por un hilo). Martita’s sense that a region of herself
was dead, and her viewing her life as having already lived, from the perspective of being
dead, reveal just how tenuous that thread can be. Not only does life by a thread encom-
pass the actions that protect and hold a life from the very real dangers of gunfire on the
street; it also encompasses the small and unremarkable acts that forge intimacies in
which life acquires its life.
Here, I believe it is necessary to move from an emphasis on “everyday resilience” in
which individuals demonstrate an extraordinary talent for life against a background
defined by a “continuum of violence” (Scheper-Hughes 2008). Instead, we might begin
to appreciate the actual labor in threading life again and again through ordinary gestures
and words in and through violence. In so doing, we can attune ourselves to the deep
embodied sensibility that this endurance may not keep up with the fraying from violence,
when one thread is put in place for every three threads lost: when multiple losses are
The research for this chapter was generously funded by National Science Foundation Grant
no. 1123505. I would like to thank Martita for allowing me to listen, and the many women in
El Zanjón whose embraces allowed me to conduct my fieldwork and whom I consider my
respondents. I thank Veena Das for her words, which I learn from immensely. I thank Maarten
Ottens for bearing this work with me.
1. All names are pseudonyms, including the name of the El Zanjón neighborhood.
2. Elsewhere I have discussed the fluctuating relationship of intimacy and estrangement
between police and neighbors; see Han 2013.
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Sarah Pinto
In the mid-1980s, a young army officer took his bride to Agra. This was no honeymoon
to the Taj Mahal, but a visit to Agra’s other storied destination. At the Agra Institute of
Mental Health (formerly the Agra Asylum, then the Agra Mental Hospital)—an institu-
tion that has made the city as associated with the lonely fate of the mad as with remem-
brance of the beloved, as well known for lost lives as for loves immortalized in marble—
Nishchal introduced Tulsi to his mother. Ammi, as they called her, had been living there
for fifteen years, since, defeated by efforts to abate her schizophrenia, her husband, Kes-
hav, Nishchal’s father, institutionalized her. Nearly fifteen years after that first visit as a
married couple, Tulsi and Nishchal brought Ammi out of Agra. They had waited for
conditions to be right—when Nishchal could leave a military career and life in motion,
when family tensions calmed. The latter never happened, so “one fine day,” as Tulsi
described it, Nishchal just “took the car, drove to Agra, and brought her home.”
Tulsi had accompanied Nishchal to Agra twice yearly, in timings dependent on army
placements. Their stays were brief and told little of Ammi’s day-to-day existence. They
brought supplies—saris, petticoats, blouses, soap, food—that they suspected hospital
workers kept for themselves. They gave Ammi sweets and, when in season, mangoes,
whose juices may have reminded her of childhood visits to the family’s country landhold-
ing, when she and her eight siblings were attended by village girls assigned one to each
daughter, summers when they ate ripe mangoes by the bucketful. After receiving
her gifts, Ammi would, in Tulsi’s words, “go back into her own world,” singing bhajans,
5 10
conducting pujas in the air, speaking to gods and unseen entities. She returned to the
yard and walked up and down its long pathways.
In India, master narratives about aging and mental illness channel into two plots: the
myth of abandonment, the casting out of those deemed unfit for society (epitomized by
women “dumped” in mental institutions); and the myth of the “Indian family,” the embrace
of the ill and aged by the caring attentions of kin. These counterstories portray India as
fissured by modernity and its others, the bane of the “backward” or the succor of tradi-
tion—as what Lawrence Cohen calls “an irrevocably split world” (2007, 105). But Cohen
and other ethnographers of aging in India find other things of note: tensions and vulner-
abilities within kinship, responses to social and economic pressures of contemporary life—
things that tell more complicated and cosmopolitan tales than those encapsulated by “the
good family,” “the bad family,” or “the family” at all (Cohen 1999; Lamb 2000).
I met Tulsi in the city of Ammi’s youth. For several years, I visited Ammi, Tulsi, and
their extended family in interactions that were, for me, welcome commas in longer
stretches spent working in psychiatric wards. In making sense of circumstances in those
places, I was steeped not only in forceful cultural narratives, but in anthropological writ-
ing about abandonment, critiques of new institutions, products of global biopolitical
arrangements that served as catchment areas for the socially excluded, places where the
normalizing work of clinical knowledge practices dovetailed with the moral codes of
family life (Biehl 2005; Povinelli 2006, 2011). Ammi’s life upended this idea, too. Neither
abandonment nor inclusion was fully accomplished in her movements. They certainly
did not map onto institutions or households in a meaningful way.
I found more to make of ways of living and moving, Ammi’s and those of the people
who passed through her wake: small bodily movements that patterned hours into days,
and large passages between cities and continents that patterned days into months, years,
and lifetimes. This involved a look toward literal movements, and required seeking in
Ammi’s bodily habitations something other than the ordering work of normalization or
the resistant work of insubordination; something other than bodies as nodes of discourse,
“performing” and “making sense”; something involving, instead, the “real incorporeality
of the concrete,” all-but-inscrutable ways of being-in-passage (Massumi 2002, 5).
In Agra and out of it, walking, gestures, and passages were the ordering elements of
Ammi’s life, suggesting paradoxes of selfhood at once ontological and deeply social. They
involved history, not only in the sense of habitus described by Pierre Bourdieu (1977) as
symbolic fields enlivened in durable bodily practices, but in the immediacy of sensations
conditioned, but never completely, by spaces and the relations that enter them. A person
can walk only so far before she meets a wall; a door locked when one person visits may
be opened when another comes. Though no less choreographed than movements in
which one might find evidence of cultural norms, ideals, or roles—the gestures of daily
labors, aspirations, or skilled executions (Bourdieu 1977; Downey 1998; Wacquant 2004;
Boddy 1989)—Ammi’s movements were happenstance patterns, particular and peculiar.
5 12 • SARAH PINTO
eaten by rats, and cockroaches, and all sorts of things, so we had to say don’t—not don’t,
but we had to get her out of that habit over there, always in her sari a laddu to put it out
for the squirrels and for the birds.” Out of Agra, feeding others remained one of Ammi’s
habits. She offered pieces from her plate before taking bites herself.
Agra’s reputation as a place of confinement and stasis is interrupted by its own his-
tory. In the 1960s, its director, K. C. Dube, an internationally renowned scholar and
friend of Nishchal’s family, published a paper in the Indian Journal of Psychiatry that
called for “unlocking the wards.” Critical of the use of physical restraint, Dube described
his efforts to reinstate patients’ “personal liberty” by allowing freedom of movement
through hospital grounds (1963, 2). Patients permitted mobility showed less “hostility,”
were “relaxed and happier,” and “escapes were very few” (4). Dube felt that freedom of
movement was not only ethical, but healing, necessary for creating “therapeutic com-
munities” (2, 6). He described encountering terrible conditions in Agra’s locked wards
and his distress at the way patients begged to be discharged (4). Clinical environment
was an essential part of patient well-being, he wrote, and movement integral to social life;
a healthy clinical setting was formed through “healthy relationships” (2). Agra was, then,
even during Ammi’s time, a place for experiments in freedom, for challenging received
wisdom about the nature of the “mental patient” and the mobility she might be allowed.
Ammi’s pacing is part of this history, though how it speaks to health and liberation is
open to question. Where walking might involve a journey, the tracing of a narrative, or
where lines of movement might map the trails of a story, or pathways represent progress
(Ingold 2007), the repetitive movements of pacing suggest something different. Unlike
walking, pacing is nonnarrative (Desjarlais 1997). It is not a journey and does not lend
itself to the emplotment that makes walking like storytelling, or pathways evidence of a
remembered self (Desjarlais 1997). Pacing destabilizes the relationship of presence to
experience, the “mode of being known in the modern West . . ., an inwardly reflexive,
hermeneutically rich process that coheres through time by way of narrative” (Desjarlais
1997, 17). Pacing defers cohesion and interpretive depth. Its directionless movement, or
movement of limited direction, involves “acutely sensorial . . . awareness” and has “little
room for introspection” (22). Or so much we may surmise. There may be stories, plots,
and contemplation in Ammi’s footsteps, but they are not available to us.
Pacing condenses the two histories of Agra—Ammi’s and Dube’s. It contains con-
trasts between Ammi’s poor condition and Dube’s progressive efforts, between move-
ment as therapeutic or symptomatic, as liberating or sign of confinement. It bears the
irony of Dube’s efforts, or at least indicates differences between scholarly ideals and
realities of clinical practice. It is easy to think of places like Agra as settings of exclusion
and confinement, places of enclosure defined by a lack of mobility and epitomized by
locked doors. It is just as easy to conflate movement with freedom. But Ammi’s pacing
in Agra, and movements surrounding her, involved different arrangements.
In the mid-1990s Nishchal took leave from the military and began planning for life
with Ammi. Dube had been insisting she no longer belonged in a hospital. Ideas about
5 14 • SARAH PINTO
retirees, and he had relatives and friends around the corner. Ammi’s bedroom was
shifted from the house to the servant’s quarters. Though smaller than her original room,
it had a view of the mountains. Tulsi was not happy with this arrangement. She worried
about Ammi and about how it looked to others that Ammi lived in the servant quarters.
But there was little she felt she could do to change this. It was a small sacrifice in the
larger scheme of things.
Once Ammi was quieted into familiarity with her surroundings, her limbs settled into
a rhythm of predictable flows. Her days involved walking through the house, the rooftop,
and the small front and back gardens. Rather than the back-and-forth of pacing, these pas-
sages were repeated circuits, round and cyclical, with stations along the way, at once small
journeys marking out the day and ways of getting from one place to another. She entered
the house through one of the back doors—into the kitchen or bedrooms, then into the liv-
ing area via the dining room, where the saint Sai Baba castigated her from his photo on the
wall. Then down a step into the drawing room and out the front door to the veranda.
Though she walked up to the gate, she was too frightened, Tulsi said, to go farther.
A year or so after Tulsi and I first met, she confessed (as she put it) that they had
received residence papers overseas, where Nishchal had accepted a posting. She asked
me not to speak of this until the news was open: “If anyone hears, they will immediately
say, ‘They have abandoned that woman.’ ”
I asked if they had considered taking Ammi with them. “It really wouldn’t be possi-
ble,” Tulsi said. The change would be too traumatic. “And she hates going out. Even now,
she will only go out of the house with Nishchal.” The apartment in the new city would be
too small. Here, “she can be outside and come and go through the house and her own
room in the outhouse.”
She recalled that when they moved Ammi into the new home, they had also built a
room onto their home in Delhi in case it became necessary to bring her back. But Tulsi
soon realized this would never be possible. It would be too confining and at the same
time “too public,” too close to others in the house. The same would be true in the new
place.
“This is the best we can manage. She’s in a home, she’s not lost, she is healthy, she is
with people. We visit her every month. As long as she is healthy and happy, she is in a
home, we have built a home for her, that’s good.”
Tulsi and Nishchal moved away, Ammi remained in her home, and Nishchal’s father
continued his visits. He seldom acknowledged Ammi. When he was not there, she ate at
the dining-room table. When he was, she took her metal plate to her bedroom or sat on
a chair at the edge of the dining room. Tulsi and Nishchal visited as often as they could—
a few times a year, at least. Amid comings and goings, Ammi’s world was measured into
time frames that were, at the same time, spatial arrangements and distillations of kin-
ship. The presence of others determined possibilities for movement. When others were
there, the house was open. Bedroom doors (and the telephone) were unlocked; additional
doors onto the garden were opened. When Keshav, Tulsi, and Nishchal left, they locked
5 16 • SARAH PINTO
staff, her sons, and the infant daughter of Keshav’s widowed sister who was taking a
teacher-training course.
When Keshav was at the front in the war with China, Ammi became depressed, sleep-
ing for long stretches and then not at all, pacing for hours. Though Nishchal and the
servants became her caregivers, the task overwhelmed them. Tulsi said, “The servants
couldn’t handle her because she was very angry. She’d walk out in her petticoat, not in
her clothes. Once she hit the servant, she punched a woman, she broke her nose, and
she’d go sit in the local chai stall in the corner.” Embarrassed by his mother’s behavior,
Nishchal would go outside and beg her to come in.
When Nishchal’s father returned, he started Neelam on a series of treatments. She
saw a European psychiatrist and began what would become decades of electroshock
therapy. It is unlikely that Ammi was anaesthetized for ECT (electroconvulsive therapy);
“direct” application of ECT is common practice in Indian psychiatry. That these treat-
ments were traumatic was evident in the way, decades later, she spoke about “wires on
her head,” “electricity,” and “shocks,” and refused to turn on lights or touch an electrical
outlet. Keshav came to feel that Neelam’s mental condition in old age was as much the
result of ECT as of the illness itself.
When Nishchal was in his late teens, his father, now retired from the military and
entering the foreign service, sent Neelam to her family home—the infamous estate with
its crowd of siblings, in-laws, servants, and visitors. There, her symptoms worsened and
her diagnosis changed from depression to schizophrenia. She may have been teased by
her brother, who inflated her paranoid suspicion that her husband was having an affair
(this is what Tulsi said). Or the account of her brother’s ruthlessness may have been a
story told by a woman in the throes of delusion (what Neelam’s sister-in-law said). When
Keshav returned, devastated by his wife’s condition, he took her home.
Not long afterward, Ammi was put in Agra. People disagree on how and when the
decision was made, but for Nishchal, his mother’s commitment to an institution came
as a surprise. He returned home from army training to find his mother absent. “Where
is Mummy?” he asked. His brother said he and their father had taken her to Agra.
Though accounts of this period are inconsistent, this was the start of decades of strife
and a core episode in family narratives. People debated the role Ammi’s brother played
in her commitment and the culpability of Keshav and Nishchal’s younger brother. They
differed not only on who was to blame for Ammi’s decades in Agra, but on the source of
her illness. According to Ammi’s sisters, the instability of army life, financial struggles,
overwhelming household labors, and a husband’s long absences pushed a woman with
a vivid emotional life into mental illness. For Keshav’s family, Neelam brought illness
into the marriage.
Details depended on the teller’s stakes in the decisions that led to Ammi’s commit-
ment, and confounded any easy sense of a “subject,” of how a person might bear or relate
to her own past or the pasts of others. In a challenge to narration, Ammi was the con-
catenation of multiple and conflicting histories, including family histories and histories
In reflecting on these lives and histories, I have found myself turning to metaphors of
dance. This is not to say that there was something dance-like in Ammi’s movements
(though there was), or that hers were choreographies with aesthetic sensibility or inten-
tional structure (though they may have been). Rather, ontological conditions of dance
offer ways of thinking about intersubjective life in, and of thinking about schizophrenia
as imbricated with, vicissitudes of presence, presence in itself, and presence in life with
others—the constant habitation of deaths-in-life.
For many who think about choreography, its most striking ontological offering is its
ephemerality. In dance, time and change are conditions of existence, not only in symbolic
portrayals, but in the ways loss is inherent to the medium. At the same time, choreo-
graphed dance provides a way for one body to inhabit another—that of a lost other, or
a lost self (Jackson and Shapiro-Phim, 2008). As in Ammi’s case, thinking with
dance permits an unstable status of “subjecthood,” a sense of subjects as malleable and
elusive, lost in daily choreographies and formed in encounters with the contours of oth-
ers’ movements.
But there was one literal connection to dance. Regardless of what Ammi’s family
blamed for her illness, nearly all spoke of her childhood talent for Kathak, a dance form
associated with the city of her birth. “She was a very romantic person,” one of Neelam’s
sisters said. “She used to love dance. She loved poetry. She was a very, very good dancer,
extremely good.” That sister had visited Neelam in Agra only once. After that, she said,
it was too difficult to “see her in such a place.” She did not return. Speaking to me in her
home in Delhi, as Tulsi sat by and my daughter played in the garden, she described
Neelam’s childhood.
A renowned Kathak guru, invited to the house to give lessons, felt that Neelam had
special promise, even more than his own son. He told Neelam’s father he wanted to make
Neelam his special student, to ritually bind her in discipleship. But her father objected,
the sister explained: “He thought that if she goes out and performs here and there it will
bring a bad name. . . . He didn’t want her to be like one of those dancing girls. It was very
backward then. It’s not like South India, where they think of [dance] as a good art.”
Neelam had been performing at programs and competitions, earning medals and rec-
ognition. “One day, someone said, ‘[The guru] is calling, there is a function going on, and
they want her to perform.’ And my father was there. And he said, ‘At this time of night? It’s
seven o’clock, it’s getting dark, she can’t go.’ And from that day onward it all stopped.”
“Everything, even the lessons?” I asked.
5 18 • SARAH PINTO
“Yah, no dancing. ‘Not from my family, no one will go out and dance like that’ [my
father said]. So that was it. She used to dance in front of others, she was the center of
attraction; she felt important. And suddenly all of that was gone. It was gone. So that also
had something to do with it.”
It was not that their father objected to educating girls. “We were all encouraged in our
education. In that there was no discrimination. My father was very broad-minded, he
loved to teach people. Hanh, he said—yes, study as much as you want. She studied to her
MA. In Hindi, in X college. She was a good student. All that was there, but somehow I
think the artist inside her got broke.”
Neelam was not surprised by her father’s pronouncement. She knew she would not
be allowed to dance forever. She said nothing. But for years she would retreat to her room
and, surrounded by mirrors, dance for hours.
In the early days of her illness Nishchal’s father enrolled Neelam in dance classes,
thinking it might be therapeutic to reawaken her creativity. But her body was aged, stiff-
ened by bearing and raising children. The movements were too difficult to relearn, and
her thinking was too disorganized. Classes were abandoned.
When preparing for Ammi’s move to the new house, Tulsi came across her ghungroo,
her dancing bells. She gave them to Ammi, who tied them around her ankles and took
tentative steps. Sometimes, Tulsi said, she brings out the bells. “And sometimes she even
does a few small steps.”
Not long before writing this, in a large concert hall in Boston, I attended a perform-
ance given by the same boy Neelam had studied with, the son of her master, now patri-
arch of the lineage and performing with his own son. In the elderly man’s movements I
felt dancerly echoes of Ammi’s embodiment. This was less so of footsteps and turns,
things most evocative of “dance” to my Western-trained eye. I had never seen Ammi
dance, so there was no sense of connection there. Rather, in refined facial and hand
gestures of storytelling, rehearsed movements shared Ammi’s unchoreographed ones,
the delicacy and precision of small moves as she responded to invisible persons and
gods. A virtuosic demonstration of complex rhythms evoked Ammi’s habit of counting
on her fingers, over and over, interrupting streams of language with numbers.
Kathak is a narrative art. The dancer becomes a character in an epic tale—a deity, a
mortal intimate with a god—and conveys plot, conversation, and emotion in facial
expression. A solitary dancer may interact with ranks of invisible others as she appears
to respond to entities just out of sight. Either this vocabulary remained in Ammi’s own
ways of being, or its dialogic grammar simply brought to my mind the way bodies wear—
often with marked clarity—their delusions. Or I was imposing connections. I had gone
to the performance looking for shades of Ammi, for continuity with her life. I did not
expect to feel her presence in such a vivid, uncanny way. But perhaps I shouldn’t have
been surprised. I was, after all, still seeking a person through the lives of others, even
when she had long ceased to be present to them, still finding the doubleness of presence
and absence in moving bodies.
Thinking about similarities and differences between Agra and Ammi’s new home, I was
reminded of the paintings of Edward Hopper. Many feature women gazing out of interior
spaces. Some, in the absence of a human subject, portray empty, windowed rooms,
boundaries between interior and exterior—spaces divided by shadow and sunlight, win-
dows onto sea or sky. Are these images of confinement or contentment; safety in domes-
ticity with a gesture toward freedom, or containment with freedom denied? Yellow
wallpaper or rooms of one’s own? Distinctions are unclear, and the relationships of “inte-
rior” and “exterior” to each other is mutable. Light flooding through windows is strikingly
warm, but it divides interiors into angular fragments of light and dark while remaining
undifferentiated outside. Does light illuminate and beckon or intrude and expose? Does
it fragment or conjoin? Is it movement or stasis? In both its elsewhereness and broken
availability, light in its passage destabilizes associations of interiors with either contain-
ment or security, and exteriors with either freedom or dislocation.
In Ammi’s life, locations were difficult to evaluate. It is impossible to know, though we
might conjecture, what “the wind in the trees” brought with it. One can think of Ammi’s
view of the mountains from a room in the servant’s quarters. Or of her “liberation” from
medication into a consciousness swamped by delusion. Or her place “at home” in a house
REFERENCES
Benjamin, Jessica. 2001. “The Primal Leap of Psychoanalysis, from Body to Speech: Freud,
Feminism, and the Vicissitudes of the Transference.” In Storms in Her Head: Freud and the
Construction of Hysteria, edited by Muriel Dimen and Adrienne Harris, 31–64. New York:
Other Press
Biehl, João. 2005. Vita: Life in a Zone of Social Abandonment. Berkeley: University of California
Press.
Not Dead Yet (NDY) is a U.S.-based disability rights group founded in 1996 that opposes
euthanasia and assisted suicide. The group—establishing its credentials for ironic and
deadpan humor—takes its name from the scene quoted above in the film Monty Python
and the Holy Grail, in which plague victims are thrown onto a cart and hauled off to be
buried. A man dumped on a pile of corpses protests that he is “not dead yet!!” but his
cries are ignored as the tumbrel rolls on in a Pythonesque moment of gallows humor.
Not Dead Yet offers noisy opposition to “deadly forms of discrimination against old, ill
and disabled people . . . [and] demands the equal protection of the law for the targets of
so called ‘mercy killing’ whose lives are seen as worthless” (Drake 2013).
We start our chapter with the case of NDY to highlight the cultural labor and activism
that have been crucial to changing the disability imaginary in America (and elsewhere)
beginning in the late twentieth century, when the presence of disability in public life
became increasingly visible. A central part of these conversations has to do with who is
entitled not only to the rights of citizenship, a watershed accomplishment of legislation
in the United States and elsewhere, but to life itself, whatever supports that might
require.
Not Dead Yet is one of many social formations that make up the evolving American
“disability world” that we have been studying over the last decade, starting with questions
about how knowledge (or ignorance) of disability enters into prenatal diagnosis decisions
(R. Rapp 2000; Ginsburg and Rapp 1999). Later, as parents of children with disabilities,
we began an exploration of how children have come to be classified for special educational
525
services. They currently represent 13%–15% of the nation’s students; in New York City,
where we focus our work, the number is 17%. We became particularly interested in how
families, schools, clinicians, scientists, media makers, and activists have all been reimag-
ining both domestic and public life around that social fact. As we follow children, families,
and projects over time, we have expanded our framework to encompass questions of dis-
ability as they are imagined and organized over the life cycle (R. Rapp and Ginsburg 2011,
2012; Ginsburg 2012).
In 1999, Not Dead Yet made headlines through its demonstrations against Peter
Singer, an Australian philosopher hired by Princeton University, whose writings support
infanticide of disabled newborns. Not inclined to pull punches, NDY labeled him “the
most dangerous man on earth” (Hari 2004). In the twenty-first century, NDY activists
amplified their dissent, becoming increasingly visible during high-profile controversies
about living and dying with disabilities. In 2004, for example, the group protested the
removal of Terri Schiavo’s feeding tube1, as well as the message of the movie Million Dol-
lar Baby, in which the injection of an overdose of adrenalin to euthanize a suicidal woman
rendered quadriplegic from a boxing accident is depicted as a compassionate act. Not
Dead Yet’s unruly and disruptive protests underscore the dark edge of the current zeit-
geist, illuminated by their activism on behalf of people with disabilities. The questions
of life and death that these eruptions pose—infanticide for profoundly disabled new-
borns, the complex issues raised by long-term life support, the popular cinematic por-
trayal of a “preference” for death over living with disability—are unquestionably part of
contemporary social life. Yet they build on a history in which assumptions about the
appropriateness of ending the lives of those with what were then considered severe dis-
abilities were widely accepted as part of the heritage of eugenic thinking.
Our opening examples emphasize that issues of living and dying related to disability are
“not dead yet”—always in conversation with a long trajectory of debate on vexed issues of
medical intervention, stigma, and social isolation. Indeed, the present-day disability rights
movement is haunted by—and protesting against—the legacy of eugenic ideas and result-
ing social policies that in the early twentieth century made their way from the United
Kingdom to the United States to Germany and then resonated across the globe. These
clashing perspectives—of eugenics and disability rights—represent what we have else-
where labeled the doubled telos of modernity (R. Rapp and Ginsburg 2001). By this we
mean that the democratizing impulse toward the inclusion of disability is inevitably in
tension with what may be considered its opposite: the drive toward perfectibility that fuels
much recent culturally seductive neoeugenic medical innovation and intervention. These
seeming antinomies, we argue, are foundational to the complex biopolitics that shape
living and dying in the current era. We suggest that the intensity and salience of disability
He simply thinks it would have been better, all things considered, to have given my parents
the option of killing the baby I once was, and to let other parents kill similar babies as they
come along and thereby avoid the suffering that comes with lives like mine and satisfy the
reasonable preferences of parents for a different kind of child. . . . As a shield from the
terrible purity of Singer’s vision, I’ll look to the corruption that comes from interconnect-
edness. To justify my hopes that Singer’s theoretical world—and its entirely logical exten-
sions—won’t become real, I’ll invoke the muck and mess and undeniable reality of disabled
lives well lived. That’s the best I can do. (Johnson 2003)
L I F E , D E AT H , A N D A S S I S T I V E R E P R O D U C T I V E T E C H N O L O G I E S
K I N S H I P, C A R E TA K I N G , A N D T H E N E W N O R M A L
As our chapter thus far makes clear, the category of disability frequently escapes the
confines of the medical, establishing the grounds for a “new normal.” Disability imaginar-
ies are constantly reinvented. They reverberate across multiple arenas, from the most
intimate realms of sociality shaped by religion, kinship, and family life to schools, to
housing, and to community-based forms of recognition. Other arenas in which disability
issues are being reframed include a remarkably wide range of arts and letters, along with
national legislative and juridical bodies, and international arenas such as the United
Nations. These emerging cultural claims on inclusion, from pregnancy decisions to care
for those dealing with extreme old age, bring new challenges to families and other inti-
mates whose experiences of living and dying are necessarily shaped by the fact of disabil-
ity, and the daily life adjustments it entails. In addition to the medical innovations dis-
cussed above, a range of seemingly mundane material alterations contribute to a sense
of the “new normal” as incorporative of disability. These might include (among other
things) the routinization of universal design in the built environment, the incorporation
of service dogs, closed captioning and audio description for media, and a variety of other
creative accommodations (Becker 1980; Cohen 1998; Layne 1996; Leibing and Cohen
2006: Livingston 2005; MacMakin 2011).
Extreme dependency comes in many forms. . . . Washing the body of a child with Down
Syndrome seems vastly easier to contemplate than washing the incapacitated and inconti-
nent body of a parent who hates being in such a condition, especially when both the washer
and the washed remember the parent’s prime. So the way we think about the needs of
children and adults with disabilities is not a special department of life, easily cordoned off
from the “average case.” It also has implications for the way we think about our parents as
they age—and about the needs we ourselves are likely to have if we live long enough. As
the life span increases, the relative independence many of us enjoy looks more and more
like a temporary condition, a phase of life that we move into gradually, and which we all
too quickly begin to leave. Even in our prime, many of us encounter shorter or longer
periods of extreme dependency on others—after surgery or a severe injury, or during a
period of depression or acute mental stress. (Nussbaum 2001)
The implication of Nussbaum’s prescient discussion of not only everyday life but the
vagaries of dependency over the life cycle helps “scale up” our analysis.
The eruption of disability into public consciousness in places like North America is
linked to a transforming demographic reality that we ignore at our peril. A growing
number of people are surviving who might not have in the past, from those diagnosed
with life-threatening conditions as infants, to people of all ages living with disabilities
however they were acquired, to the increasing longevity of people into extreme old age,
with all the frailties that might entail. These social facts not only broaden the range of
disability awareness but also raise difficult questions regarding both the daily life experi-
ence and political economy of care. Indeed, more and more adults with and without
disabilities find themselves in the center of what we have come to call the “Intergenera-
tional Vortex of Caretaking” (or IVoC) as kin demands extend across households and life
In the demographic projections from the U.S. Census and accompanying studies, it is
evident that the percentage of Americans with disabilities is both an expanding portion
of the population and a growing absolute number. To give a rough sense of the scale, as
of 2010, the U.S. Census estimates that there were fifty-seven million people with disa-
bilities in the civilian noninstitutionalized population; they constitute 19% of the popula-
tion. Approximately 15% of these are of school age (between four and twenty-one years
of age) while 50% of adults over sixty-five (currently 12.4% of the population) are living
with some form of disability, whether or not they comfortably embrace that label (U.S.
Census Bureau 2012). By 2030, the elderly population of the United States is expected
to grow to 19% of the total population, with significant consequences for the total number
of disabled citizens potentially requiring care (Administration on Aging 2013; Knickman
and Snell 2002).
The implications for the rapid growth of disability as a social category and its attend-
ant consequences in terms of services and caretaking are clearly visible, for example, in
the data on two conditions that emerge at different positions in the life cycle. Both have
gained considerable public attention in twenty-first-century America: autism spectrum
disorders (ASDs) and age-related dementia, particularly with the rise of “the new old
age”—the issues that have emerged as many more of our elderly live beyond eighty-five
years of age, and some well into their nineties. Together the numbers associated with
these diagnoses indicate an escalating presence of disability in daily life, raising ques-
tions of caretaking and incorporation of difference into the body politic. A 2008 Centers
for Disease Control and Prevention (CDC) study, based on school records, noted the
increasing prevalence of ASDs since 2000; the numbers have almost doubled in less
than a decade. This research estimates that one in eighty-eight children (aged one
through eight) has been diagnosed with an ASD, one that generally requires considerable
support (Hoffman 2013).
A more recent, 2011 survey by the CDC based on random telephone interviews shows an
even higher incidence, “with parents describing 1 in 50 children as having significant social
or other challenges” (CDC 2011). Whatever the correct number (and these are constantly
contested figures), the implications for social support are clear. As autism expert Deborah
A. Fein explained in response to the latter study: “We need to find ways of funding and
providing help to these children” (quoted in Hoffman 2013). At the other end of the age
spectrum, a recent report suggests that the number of people over sixty-five diagnosed with
T H I N K I N G F O RWA R D
These numbers provide powerful evidence of the significance of the study of disability
for anthropologists and others. Despite the social and political progress that has been
made toward recognizing full citizenship of people with disabilities in North America
and beyond, for many this topic evokes the problems of marginalized identities. On the
contrary, we argue that disability should be recognized as central to the human condition
and also part of a tectonic shift in our overall social structure, with enormous implications
for the political economy of caretaking.
Our ethnographic work on disability across cycles of living and dying is helping us to
understand how new cultural imaginaries are emerging in many sectors of everyday life.
Disability consciousness both erupts and is suppressed continually in many dispersed
social locations in which questions of living and dying are never far from the surface.
These include but are not limited to in vitro fertilization (IVF) clinics, mothers’ groups,
special-education classrooms, activist initiatives, and the popular realm of books, film
festivals, television shows, and a mushrooming digital presence (Ginsburg 2012), not to
mention the long-standing sites of doctors’ offices and scientific laboratories, where the
medical model of disability is constantly reinvented. While their connections are not
always evident, collectively they demonstrate the complexity of the doubled telos of
modernity we have identified in the cases we discuss in this chapter. As we have followed
our subjects and our topic across such multisited domains, we as anthropologists have
come to appreciate how ubiquitous disability is as a social fact. The demographic statis-
tics we cite are an instantiation in another register of this recognition. The numbers
underscore what our ethnographic allies have been teaching us about their quotidian
experiences with the differences that disabilities make.
In order to comprehend the impact of the upturn in numbers of Americans with
disabilities throughout the life cycle, we have had to tack back and forth between the
NOTES
We thank Veena Das and Clara Han for calling this essay into existence and for their patience
with delays resulting from our own adventures in disability worlds. We are grateful to the
Spencer Foundation and the NYU Institute for Human Development and Social Change for
their support of this work, as well as to the many people who generously shared their stories
with us. We also want to acknowledge with gratitude the excellent bibliographic assistance of
Dr. Alison Cool.
1. Terri Schiavo was a young woman who at age twenty-seven, in 1990, suffered a cardiac
arrest resulting in massive brain damage. She was put on prolonged life support and contin-
ued to live in a persistent vegetative state. Her husband’s wish to terminate life support for
her was challenged by Schiavo’s parents; she stayed on life support due to state and federal
legislative intervention until 2005, when life support finally was terminated. The controversial
case became a public social drama attracting strong opinions and extensive multimedia cover-
age in support of both sides.
2. The rollout of NIPT has already begun, with twenty-seven academic medical centers in
the United States and several national health ministries in Western Europe testing these new
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Adams, Rachel. 2012. “Looking for Suffering in All the Wrong Places.” Huffington Post, May
9. Accessed September 25, 2012. www.huffingtonpost.com/rachel-adams/looking-for-
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Accessed June 20, 2013. www.aoa.gov/Aging_Statistics/.
Asch, Adrienne. 2000. “Why I Haven’t Changed My Mind about Prenatal Diagnosis: Reflec-
tions and Refinements.” In Prenatal Testing and Disability Rights, edited by Erik Parens and
Adrienne Asch, 234–60. Washington: Georgetown University Press.
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Anthropology of/on Disability.” Medical Anthropology 27 (3): 219–26.
Becker, Gaylene. 1980. Growing Old in Silence. Berkeley: University of California Press.
Belluck, Pam. 2013. “Dementia Care Costs Are Soaring, Study Finds.” New York Times, April
3. Accessed June 20, 2013. www.nytimes.com/2013/04/04/health/dementia-care-costs-
are-soaring-study-finds.html.
Bernhardt, Barbara A., Danielle Soucier, Karen Hanson, M. S. Savage, L. Jackson, and R. J.
Wapner. 2013. “Women’s Experiences Receiving Abnormal Prenatal Chromosomal Micro-
array Testing Results.” Genetics in Medicine 15 (2): 139–45.
Bérubé, Michael. 1996. Life As We Know It: A Father, a Family, and an Exceptional Child. New
York: Pantheon Books.
Caplan, Arthur. 2007. “Is ‘Peter Pan’ Treatment a Moral Choice?” Msnbc.com. Accessed June
20, 2013. www.nbcnews.com/id/16472931/ns/health-health_care/t/peter-pan-treatment-
moral-choice/.
CDC (Centers for Disease Control and Prevention). 2011. “New Data on Autism Spectrum
Disorders.” Accessed March 4, 2015. http://www.autism.org.sg/resources/articles/CDC-
Features-New-Data-on-ASD.pdf.
Cohen, Lawrence. 1998. No Aging in India: Alzheimer’s, the Bad Family, and Other Modern
Things. Berkeley: University of California Press.
Dollar, Ellen Painter. 2012. No Easy Choice: A Story of Disability, Parenthood, and Faith in an
Age of Advanced Reproduction. Louisville, KY: Westminster John Knox Press.
Drake, Stephen. 2013. “Rochester Disability Community Remembers Disabled Victims of
Domestic Violence, Deaf Victims of Euthanasia as Part of National Disability Mourning
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Finger, Anne. 1990. Past Due: A Story of Disability, Pregnancy and Birth. Berkeley, CA: Seal Press.
Frank, Gelya. 2000. Venus on Wheels: Two Decades of Dialogue on Disability, Biography, and
Being Female in America. Berkeley: University of California Press.
Jerry was a thin, light-skinned African-American who suffered from sickle-cell anemia.
The hallmark of the condition is acute painful episodes, comparable to advanced bone-
cancer pain. These excruciating events are often treated in hospital emergency rooms,
where patients are given access to severely restricted Schedule II pain medications. For
a number of reasons, many sickle-cell patients find that they are denied access to opiates
like oxycodone and morphine, or denied the necessary dosage to adequately relieve their
pain. Jerry explained to me why he had been denied access in his home state.
jerry: Drugs are drugs, legal or illegal. There are some benefits to them and then
there are some uncool benefits to them. When you’re talking about [illegal]
drugs for profit or gain, I got a problem with that. When you’re talking
about [legal] drugs to resolve certain medical issues, I understand it, but it
still [is about] profit and gain. I got problems when people who may have
minimal chronic illness, or minimal chronic pain, who get one hundred
tablets of Percocet and don’t need them. And then sell them for profit. And
then someone like myself can’t get them.
carolyn: Why can’t you get them?
jerry: Because I’m labeled as, um, I’m labeled as a drug seeker. [Voice becomes
confident and strong.] I’m labeled as a drug seeker.
carolyn: Are those in your medical records?
jerry: Yes. They’re in my medical records and I mean, it still goes back to the
stigmatization that they have in terms of sickle-cell patients. I’m fifty-nine
542
years old. My first experience with drugs was probably age five. And I’m
saying probably because that’s the only thing that calmed me down when
they diagnosed me with sickle-cell. I grew up taking legal drugs. It wasn’t
no question.
In this excerpt, Jerry highlights the questionable distinction between legal versus
illegal drugs. Given his decades of experience with prescribed Schedule II drugs, it made
little sense to him that his occasional use of illegal drugs like marijuana and cocaine to
alleviate pain cost him access to prescription opiates. After a positive urine test, Jerry was
disallowed prescription pain medications for six months, at which point he tested posi-
tive again. It took two years and three months for him to be allowed access to Schedule
II prescription narcotics again. Regardless of his medical status as a drug seeker, Jerry
lived daily with levels of pain most people could only image. His solution was to purchase
legal medications illegally from friends at exorbitant cost—as much as five dollars a pill:
“There has been times when I’ve literally suffered and ended up . . . buying legal drugs
off the street to maintain my level of productivity and function.”1
Given that the drug that provided Jerry the greatest pain relief was marijuana, a drug
that was legal in many states, how do we understand mandated medical monitoring of
patients? The medical rationale is that patients can become more dependent, can become
tolerant, or can develop hyperalgesia. But, as has been noted in a number of ethnogra-
phies, forms of drug dependency and the leading of a functional life are not mutually
exclusive (Bourgois and Schonberg 2009; Campbell and Shaw 2008). Jerry was indeed
highly functional when he was not in pain. He had a job and a postgraduate education.
He was married and had raised two children. So rather than protect Jerry from himself,
or society from a dangerous drug addict, the highly bureaucratic drug-monitoring regi-
men practiced at the discretion of Jerry’s physician protected the institution and the
profession.
In the clinic, current models of health care try to bring together evidence-based med-
icine (rational action) and consumerist models of care (individualism). In theory, evi-
dence-based medicine is supposed to push back against physician bias, and patient-
directed care against paternalism. Both approaches have been treated as possible
solutions to racial health disparities. However, trying to bring together best practices with
patient-centered care has produced only confusion and ambiguity. These slippages allow
doctors to choose either to assert the authority of medicine by demanding that patients
submit to their authority or lose access to care; or to let a patient make his or her own
decision just to free the doctor and the institution from responsibility for a bad outcome.
In complete contradistinction, best evidence-based practices are sold as available on
demand—a consumerist approach to care suggested in advertisements for integrative
medicine and personalized care.
Because these approaches contradict one another, what we see in the clinic is that both
approaches do a better job of limiting the liability of the institution than in equalizing
J E R RY
Given that the science of pain treatment and addiction are still in their infancy, Jerry’s
clinical experiences are framed more profoundly by art and aesthetics than science. For
one, many legal and illegal drugs have the same effect on the body, making unclear the
rationale behind the licit/illicit distinction. Second, Jerry’s race and economic class
impacted how he was diagnosed and treated, and whether he was drug-tested. And third,
Jerry’s suffering was read narrowly through the medical gaze without appreciation for
the complicated ways in which he improvised living with a chronic illness (Kleinman,
Das, and Lock 1997). This means that many of his treatments, even evidence-based, did
not actually improve his health or quality of life. There are many sickle-cell patients who
argue that using legally prescribed pain medications causes secondary complications and
more pain, and even hastens death.9
Jerry’s physical pain was only a part of his life. He still had to make a living and main-
tain relationships. His safety net was his network of friends and family, who exchanged
not only love but services, goods, and often a place to live. Jerry had to nurture these
relationships or fall through the only safety net somewhat under his control.
jerry: Right now I’m in a very devastating state of mind. Is it because of the disease?
Part of it is. I’m borderline homeless. I’m living with a cousin right now all the
way down in Maryland. He took me in. I just recently divorced. . . . And sickle
cell patients have a tendency to have this big open heart and I’m using a
generalization but I see it like this. We’ve been sick all of our lives. We’ve
always seeked help from other people. We’re so grateful because we get the
help that we tend to open ourselves with our hearts to help others.
Pain made it difficult for Jerry to get to work and difficult to maintain the exchange-
based relationships that obligated him to give in order to receive support from others.
Punishing Jerry for using illicit pain medications by forbidding his access to prescription
pain medications treated his suffering with pain and debility as unrelated to the economic
jerry: Getting up at four o’clock in the morning. Getting ready to leave at five o’clock
in the morning. Sit around, wait two hours for my bus. Go to work. I’m in the
classroom three hours out of the day and two hours I’m just wasting. Come
back. Do the routine all over again and still have enough time to do the little
extra things that I like to do like sit on the computer and creatively design and
things of that nature.
But this past week, I took four buses to just go get my paycheck. And then the
elements with the humidity, the rain, and hurting the whole time and didn’t
have one pill to take. I mean literally hurting the whole time. And walking
without a cane.
Even without access to prescription pain medication, Jerry rarely missed a day of
work. The logic of denying pain medication to a by all accounts functional adult makes
little sense. If Jerry were unable to maintain a job or continue his education, then per-
haps a urine test would be justified. But according to his sickle-cell nurse, doctors read
Jerry through the dominant narrative about black dysfunction. This is one of the most
significant ways in which Jerry was misread in the clinic.
Self-efficacy is a term used by physicians to describe a chronically ill patient who does
not need family, friends, or significant medical support in order to flourish and stay
healthy. The medical literature argues that in order for patients to practice self-efficacy,
they must strictly follow the medication regimens determined by a physician. But more
important, they must do their best not to overuse or become dependent on medical care.
The self-efficacious patient can best be described as a kind of Horatio Alger in the clinic.
But chronically ill patients who are stoic and self-effacing in order for physicians to like
and respect them, using what sociologist Janet Shim calls cultural health capital, avoid
demanding treatment at their own peril (Shim 2010; Rouse 2011). Despite the potential
negative health outcomes that can come from rejecting treatment, Jerry, like most sickle-
cell patients I have interviewed, takes pride in being independent.
In the clinic, signifiers like race, class, gender, dress, occupation, and speech are fac-
tored into how patients are read as either dependent or independent, inappropriate
or appropriate. But what does it require to be an independent chronically ill adult? For
jerry: I can’t count on my hands and toes how many jobs I’ve had. My earnings is
poverty level. My education is higher than the standard person having sickle-cell.
And I don’t want to discredit anyone because I ran into some sickle-cell patients
who haven’t even gotten their high school diploma. In fact, I’ve been trying to
encourage them to get their GED or something. I have a bachelor’s plus. It was
hard and long because the only graduation I was able to walk across the floor on
was when I got my bachelor’s degree. That’s the only one. My high school, my
certificate program—none of the other programs was I there physically because I
was hospitalized. My high school graduation I was hospitalized getting eye
surgery. When I was graduating around to American Business School, and they
had a big graduation, I was hospitalized having six inches of my lower intestine
removed because it was gangrene because of a previous operation. I haven’t had
no other opportunity. In my lifetime, if the Lord keeps blessing me, I’m going to
walk across somebody’s floor with a doctorate. I don’t know if it’s possible. I’m
having a hard time finishing my master’s [laughs]. I don’t know, anything’s
possible.
At the time I interviewed Jerry in 2012, he was finishing his master’s degree in techni-
cal management from a state college, and he had a job teaching computers to incarcer-
ated youth. He also set himself up as a small business, which meant that he could do
computer consulting and make as much as thirty-four hundred dollars a month over and
above his disability benefits without losing them. This was in contrast to the twelve-
hundred-dollar limit for standard employment. His business license allowed him to bank
money for the months he was too sick to work. Jerry was highly functional, and with pain
medication he was able to do more and suffer less.
In the United States, it’s important not to confuse homelessness with joblessness or
lack of education. Jerry was the perfect example of this. He taught computer skills in two
juvenile-corrections facilities, getting up at 4:00 a.m. in order to catch the first of several
buses to get to his jobs. He then taught two three-hour classes about which he said, “I’m
teaching kids how to use the computer to better their life when they get out, and some
of these are hard-core criminals. Though they are juveniles, they are hard-core. A lot of
it is drug related. Drug trafficking, firearms violations, auto theft, burglary.”
Although Jerry had never been in trouble with the law, he acknowledged that fractions of
a degree separated him from the children he worked with. He easily imagined himself in
their place given his economic class and race. He achingly described how one of the sixteen-
DISCUSSION
What is most peculiar about the persistence and even growth of racial disparities since
the 1960s is that they occurred as state and nonstate institutions began to take an active
role in attempts to ameliorate them. Foucault’s descriptions of the role institutions play
in enacting and operationalizing state discourses suggest a state with an interest not only
in disciplining subjects, but in helping its subjects become “modern.” For example,
Foucault describes the imperative of French military schools in the nineteenth century
to create vigorous, competent, qualified, obedient, and moral subjects (Foucault 1995,
172). The architect of these schools imagined a place where students’ physical, academic,
political, and spiritual educations were built around the latest “scientific” approaches to
human engineering. With respect to the clinic in the eighteenth century, Foucault says
about the emergent medical gaze, “For clinical experience to become possible as a
form of knowledge, a reorganization of the hospital field, a new definition of the status
of the patient in society, and the establishment of a certain relationship between public
assistance and medical experience, between help and knowledge, became necessary; the
patient has to be enveloped in a collective, homogenous space. It was also necessary to
open up language to a whole new domain; that of a perpetual and objectively based cor-
relation of the visible and the expressible” (Foucault 1994, 196). One can say many things
about the encompassment of the French state and the sometimes brutal assertion of state
power. But from the perspective of African-American social history, at least the state had
an interest in homogenizing rather than differentiating modern and nonmodern subjects.
The modern American state is built on notions of free will and meritocratic reward,
and Americans willingly subscribe to this fiction, even Jerry. Americans accept that a
jerry: I’m blind in one eye since the age of thirteen. I have avascular necrosis of
the hip and necrosis of the bone marrow in my shoulders and my hips. My
hips are deteriorating so rapidly that I actually have been fighting off the hip
replacement for twelve, thirteen years now.
carolyn: Why?
In the clinic, Jerry’s rejection of a hip replacement was read as a sign of his inability
to reason—a conclusion that gave professionals more evidence for considering his use
of illegal drugs detrimental to his ability to function. But when set against an internal
analysis that came out six months after our interview, Jerry’s experiential knowledge
seems less like the ravings of a lunatic and more like a riddle. The analysis by Johnson
& Johnson showed that their chromium-and-cobalt articular surface replacement (ASR)
for hip-resurfacing arthroplasty (hip replacement) had a 40 percent failure rate within
five years (Meier 2013). In one FDA adverse-event report, a patient’s cobalt and chro-
mium levels were so high the physician ordered a new hip replacement and the patient
was tested for cobalt-induced cardiomyopathy.10 And herein lies the dilemma: Jerry is at
the mercy of professionals who for professional and institutional reasons must adhere
to treatment regimens built on abstracted randomized studies. These statistically sig-
nificant findings, like the ASR that went through extensive testing before being allowed
on the market, are rarely tested against the types of experiential knowledge that Jerry has
had to learn in order to survive. This means that whatever illegal medication he used to
dull the pain in his hip in order to avoid surgery may have actually extended his life. But
his resistance to medical authority also cost him access to medications that, when
available, have made his journey through life less complicated and less painful.
CONCLUSION
Scholars of inequality continue to scratch their heads about why a country that elected a
black president for two terms continued, in the early part of the twenty-first century, to
N OT E S
I want to thank Jerry, and also Nina Anderson, PhD, his nurse practitioner. Nina, who is
African-American, first described Jerry to me during a meeting where we discussed her strug-
gle to make patients like Jerry legible to physicians and institutions. I was so intrigued that
she arranged for me to interview Jerry. Nina was present at the interview. The name “Jerry” is
a pseudonym.
1. In the case of the 1990 Americans with Disabilities Act (ADA), for example, employers
can legally justify noncompliance by claiming that the ADA reduces their economic competi-
tiveness. So, if the goal of civil rights legislation was to make discriminatory acts unambiguous,
it failed.
2. In a paper entitled “Racial Health Disparities and Questions of Evidence: What Went
Wrong with Healthy People 2010,” I describe in depth the history of the program, the evidence
used, and the ultimate outcome of the initiative.
3. This conclusion is similar to Michelle Alexander’s (2012) finding that whether or not
an African-American is guilty, an arrest sets off a series of falling dominoes that ends in social
and economic disfranchisement.
4. In “The Politics of Health in the Eighteenth Century,” Michel Foucault (1980) describes
the mandate of the modern state, and the “emergence of the health and physical well-being
of the population in general as one of the essential objectives of political power” (169–70).
Foucault goes on to say, “Different power apparatuses are called upon to take charge of ‘bod-
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Alexander, Michelle. 2012. The New Jim Crow: Mass Incarceration in the Age of Colorblind-
ness. New York: New Press.
Alim, H. Samy. 2006. Roc the Mic Right: The Language of Hip Hop Culture. New York: Routledge.
Balibar, Etienne. 1991. Is There a “Neo-Racism”? In Race, Nation, Class: Ambiguous Identities,
edited by Etienne Balibar and Immanuel Wallerstein, 17–28. London: Verso.
Bell, Derrick. 1995. Serving Two Masters: Integration Ideals and Client Interests in School
Desegregation Litigation. In Critical Race Theory: The Key Writings of the Movement,
edited by Kimberle Crenshaw, Neil Gotanda, Gary Peller, and Kendall Thomas, 5–19. New
York: New Press.
Bloche, M. Gregg. 2001. Race and Discretion in American Medicine. Yale Journal of Health
Policy, Law and Ethics 1:95–131.
Anne M. Lovell
Une mort est autre chose qu’un effet nécessaire de causes générales au niveau
d’un individu. La “mort de quelqu’un” est la conjonction d’événements
singuliers qui imposent à un parcours de vie un terme qu’on ne peut pas
confondre avec le terme inéluctable de la “voie finale commune.”
GEORGES CANGUILHEM
If death is the great leveler, it does not erase the social inequalities that shape forms of
dying, and disaster-induced ones are no exception (Garcia-Acosta 2002; Klinenberg 2002;
Oliver-Smith 2002). Hurricane Katrina and the flooding of New Orleans exacerbated
preexisting vulnerabilities, culminating in socially patterned ways of dying. Those who
died in or near their homes or whose bodies were amassed in public spaces for later col-
lection were probably disproportionately African-Americans, poor, or elderly.1 Many could
not or would not evacuate, an agentivity—and not necessarily passivity or dependence
(N. Stephens et al. 2009)2—rooted in lack of resources, fears of being moved when
dependent on therapeutic or life-support devices, and solidarity of family members
remaining with their sick and disabled.3 Suicides, on the other hand, have been presented
as a fatality of the better-off and “whites.”4 The fewness of suicides precluded generaliza-
tions about their social dimensions. Yet police and local media tended to present the
suicide prone as having “more to lose” economically, like the widower perched on top of
the Greater New Orleans Bridge, “a lovely gentleman in a beautiful suit with an umbrella,
probably early sixties,” as one police officer recounted. “He’d lost his house. He told [us]
that, quite honestly, all he had left was the umbrella—and the best thing [we] could do
for him was to let him go over the bridge.”5
While structural relations underlying patterns of dying provide crucial clues for
understanding the social shaping of disasters, such analyses sidestep the question of the
559
diversity of languages deployed in relating forms of dying. As Veena Das (2002) has
noted in a different context, language, and sociological theories that assume only certain
deaths as understandable, can undermine efforts to discern the circumstances under
which some lives are valued but others not. I am interested here in such politics as they
surface when disaster survivors appropriate the deaths of others, reconstructing narra-
tives of agency at the same time that they reestablish connectedness. I examine this
process through the collective struggles to define Katrina-related deaths6 that surfaced in
the public “statistical wars” waged over suicides and death rates; in everyday postdisaster
conversations that I term Katrina talk; but also in a zeitgeist that I, too, experienced, as
an anthropologist and a part-time resident of New Orleans. I explore a local science of
death statistics that responds to the devastation wrought on health, relationality, and
citizenship. Along with the language of contagion, or “dying from Katrina,” homegrown
devices like the obituary extend the disastrous event in time and space, producing a
paradoxical response to the city’s fragmentation.
My observations are based on eighteen months of fieldwork, interviews, and docu-
ment analysis over four years, beginning five months after Katrina made landfall, on
August 28, 2005. I also use online commentary to news articles, Internet bulletins, and
the blogosphere, which constituted a unique post-Katrina public space where aid and
civic action mobilized, especially among dispersed communities (Bordreuil 2011). From
these interconnected sources emerge valuations of death hewn from a double ambigu-
ity—produced by aggregate statistics and encountered in expressions of the loss of some
ones, of individuals—but filtered through the pervasive culture of New Orleans as a “city
of the dead.”
WA G I N G T H E S TAT I S T I C A L WA R S : K AT R I N A S U I C I D E S
A N D E XC E S S M O RTA L I T Y
Within weeks of Katrina, media and mental-health professionals noted a “sharp increase”
in suicides: a pediatrician hanged himself in his partly destroyed home; a Bourbon Street
bar customer shot himself against the background of dance music; a first responder
cracked up. Even young children talked about not wanting to live (Nossiter 2005). Health
officials evoked the “walking wounded” poised to kill themselves. The local police depart-
ment’s crisis-intervention team, the main de facto mental-health service in operation
post-Katrina, reported high levels of emergency calls for suicidal behavior, including what
is euphemistically known as attempted “suicide by cop” (aiming weapons at police in hopes
of being shot and killed). Katrina’s “aftermath that kills”—the broken infrastructure,
destroyed homes, dispersed communities, inoperative institutions, lost jobs, emptied
pockets and bank accounts, let alone deaths and illnesses—shrouded the city in a collective,
endemic sense of hopelessness and despair.
Yet a few months later, world-renowned psychiatric epidemiologists would challenge
this worldview by presenting the first results of a survey of Katrina survivors
5 60 • ANNE M. LOVELL
(McConnaughey 2006). This Harvard University study produced a counterintuitive find-
ing: suicidality—thinking about, planning, or attempting suicide—turned out to be less
common among Katrina survivors interviewed than among a sample of residents from
hurricane-affected areas, including the New Orleans Metropolitan Area (NMA) and other
urban and rural areas, interviewed before Katrina (Kessler et al. 2006). Even when only
clearly distressed survivors were considered, their likelihood of suicidal ideation was
below that of similarly distressed respondents in the pre-Katrina sample.
The Harvard study’s design was not problem free, as its authors admitted.7 Ronald
Kessler, its lead epidemiologist, publicly cautioned that suicidality might still increase,
because effects of trauma develop over time (McConnaughey 2006). But he also sug-
gested a psychological mechanism at play: “post-traumatic personal growth,” defined as
inner strength and faith in the ability to rebuild one’s life, buffered against suicidality.
Epidemiological surveys of this sort aim to capture the psycho-logics of distress, reflect-
ing the turn toward an individualizing yet ecumenical language that narrowly translates
the effects of collectively experienced violence and socially shaped trauma. But my con-
cern is with the local skepticism with which low-suicidality claims were met.
Months earlier, Louisiana’s state epidemiologist had released numbers showing more
suicides for the preceding few months than for similar periods before Katrina—sixteen ver-
sus eleven. But he also summoned cautionary statistical logic by noting that with such small
numbers, the difference could be “due to chance”—a statement that drew compliments from
Kessler. (“That’s a clever epidemiologist!” he told a New York Times reporter [Saulny 2006].)
Both public figures and ordinary people I interviewed were quick to counter the small
numbers with their own anecdotes of coworkers or friends who had committed suicide
since Katrina. The Orleans Parish deputy coroner announced that suicide rates had actu-
ally tripled in the four months post-Katrina (Walsh 2006). Others remarked that suicide
counts left out evacuees outside Louisiana. Even the state’s medical director for mental
health called the official suicide rates “suspicious,” noting that deaths certified as suicides
constitute an exclusionary clause for life insurance and that numerous self-inflicted
deaths are misclassified as accidents (Saulny 2006).
Controversy over suicidality, conflated with actual deaths by suicide, penetrated the
local blogosphere.8 Bloggers debated the merits of a public act—the “coming out of the
Zoloft closet” (Oyster 2006) of a Pulitzer-Prize nominated journalist at the Times-Picay-
une, the New Orleans daily, after he journeyed “to the edge of the post-Katrina abyss, and
back again” (Rose 2006). His essay, published in the Times-Picayune and widely repub-
lished, described the generalized severe depression and suicidality he witnessed after the
hurricane: “Three friends of mine have, in fact, killed themselves in the past year and I
have wondered what that was like. I rejected it. But, for the first time, I understood why
they did it. . . . Hopeless, helpless and unable to function. A mind shutting down and
taking the body with it.” The constant flow of “accounts of death, destruction and
despondency,” he wrote, had eventually brought about his own suicidality, breakdown,
and psycho-pharmacological treatment (Rose 2006). Bloggers argued the merits of
5 62 • ANNE M. LOVELL
subaltern groups (Asad 1994) or of strengthening hegemony more generally. Statistics
can also be viewed as a capital of sorts, crucial for legitimizing social problems as worthy
of public attention (Gusfield 1980), though this involves the symbolic power of numbers
as much as the truth claims attached to them (Lovell 1992). The Katrina deaths, however,
suggest that ways of counting and representing function in distinct ways according to
what is at stake in the specific circumstances in which these acts are generated. In this
vein, I now turn to local languages of death.
D I S P U T I N G K AT R I N A - R E L AT E D D E AT H S : T H E P U L S E
O F T H E C I T I Z E N RY
The death of some one, as Canguilhem termed it (1989, xiii), constitutes a building block
in the construction of the very mortality statistics through which that individual’s erasure
is realized. However, the very complexity involved in constructing excess mortality statis-
tics in disaster situations paradoxically motivated a return to “single” deaths. Such com-
plexity merits a brief detour.
Disaster excess deaths are usually expressed as the difference between the total
number of deaths following disaster compared with the number of deaths in the same
population before disaster. Excess mortality compares rates before and after the event.
Local conditions compromise the quality and completeness of such statistics, just as
bodies missing, unclassifiable, or lost in the Katrina diaspora resisted counting, and
Katrina disrupted routine vital-statistics functions, destroying offices and records and
dispersing personnel.9 (One result was that for the four months following Katrina, the
population of New Orleans could not be estimated; hence death rates were impossible to
calculate.) Yet as conceptual practices common to demography, clinical trials, humanitar-
ian interventions, and other domains, death statistics may serve policy, moral, and ethical
considerations in crucial ways. The social and political uses of statistics concerning
“missing girls” at birth, and the excess female mortality rate after birth, provide probing
examples, despite their limitations.10
One response to the limitations of Katrina death statistics was the recourse to a locally
grown science of death rates based on the daily obituaries. At once public announcement
and personalized device, New Orleans obituaries speak through local idiom and endear-
ing nicknames, anecdotes, religious evocations, and photographs, accompanied by long
lists of family and friends left behind or joined in the afterlife. Unlike anonymous mortal-
ity statistics, the “hot anecdote” incorporated into the obituary presents an individual’s
death, a potential single—and singular—number. In the absence of reliable official statis-
tics, some local professionals turned to the obituaries less for their intimate function than
as a public source of information. One resourceful social worker, unable to locate her
elderly clients after she returned to New Orleans, discovered, by checking the daily obitu-
aries, that one-fourth of them had died. During the early postdisaster period, obituaries
also functioned alongside online bulletins, blogs, and listservs—and information taped to
5 64 • ANNE M. LOVELL
Even the journal’s editor stated the salience of a locally grown science. In his foreword
to the article, he wrote, “[The authors], alerted by the concerns of the citizenry, again took
the pulse of the community and found that the rate of death notices, as just 1 ‘imperfect’
measure of excess mortality, was suspiciously elevated.” Short-circuiting methodological
critiques, he added, “Is this an ideal population-based study? No, but both the question
and the strength of this preliminary report are something that disaster medicine special-
ists have been struggling with for decades” (K. Stephens et al. 2007).
At the same time, the editor underscored a major concern within disaster studies that
has emerged hand in hand with the “new science of war,” crystallized in the debate over
excess deaths following the 2003 invasion of Iraq. Two controversial papers in the Lancet
employed a broad definition of mortality, resulting in far higher death rates than official
reports, to the disapproval of U.S. and U.K. coalition forces. The authors included deaths
indirectly associated with violence, such as from contaminated water supplies and degraded
health infrastructures (Burnham et al. 2006; Roberts et al. 2004). The obituary study also
expanded the time frame for Katrina-related deaths (to five to ten months post-Katrina), to
the praise of some disaster specialists, who argue for including “delayed deaths” still
further displaced from the original events (Uscher-Pines 2007), such as long-term expo-
sure to toxic spills and other disasters-within-the-disaster.
As we saw, official death statistics developed for bureaucratic (vital-statistics and adminis-
trative) purposes were harnessed in reaction to citizen concerns, once the controversy over
numbers exploded. Language anchored the controversy by defining which type of mortal
effects counted, and by placing temporal markers and localizing them. In contrast, many
New Orleanians redefined such deaths by essentially extending the time frame of the
disaster as event and resituating its effects. In the place of administrative functions, this
local language of excess death became, as we shall see, a device of conservatism (Sahlins
2013), assuring structures of relationality in the face of fragmentation and dispersion.
Besides the daily obituaries, the “pulse” of the New Orleans citizenry made itself felt at
sites like an Internet bulletin published by a local African-American entrepreneur, entertain-
ment mogul, and political consultant, Vincent Sylvain. His New Orleans Agenda, which cov-
ered politics, entertainment, African-American leadership, and Katrina-recovery issues,
replaced its “Katrina Missing” section in late 2005 with a memorial column entitled “Kat-
rina Related Deaths—Let’s Not Forget.” The dates on the Sylvain postings also inadvertently
revealed the time it took to recover loved ones for burial, as in one mother’s entry: “My only
child Anthony Atiim Jones, Sr. (born, reared, lived his entire 32 years in New Orleans) died
in the flood water of Katrina on August 30, 2005. He was buried in Baton Rouge La. on
November 7, 2005. He is survived by his wife and a two-year old son Anthony Jr.”
Parallel to scientific critiques of what constitutes a “legitimate” disaster-related death,
Sylvain’s “Katrina Related Deaths” column in essence stretched the time frame and
November 4, 2007: “Just a note on the ‘Katrina related deaths’. Last week I lost a dear
friend to sarcoidosis. He and his family were displaced Katrina victims and had
moved five times this past year, causing his health services to be compromised
after each move. I know most African-Americans have a story of someone in New
Orleans who may have had a similar experience. . . . Our families and friends are
grieving badly from this unnecessary loss. . . . Thank you for remaining vigilant
on the Katrina issue.”
January 17, 2007: “Earnest Bunn, Sr. age 79. A former owner of Bunn’s Grocery in
Mid-City passed away on December 21, 2006 in Memphis, TN. Mr. Bunn
deeply missed his home, his business, and his sons he had to leave since being
displaced by Hurricane Katrina.”
February 15, 2007: “I’d like to list my uncle’s name in the Katrina Related Deaths
(Albert Joseph Butler Jr., Age 69). He died Friday, February 9th. He stayed
during Katrina and was rescued . . . via raft. Since Katrina he had been in various
hospitals . . . suffering from respiratory and heart problems.”
March 11, 2007: “Please add our father Eddie Anderson from the 7th Ward, St.
Raymond Church, Sunrise June 16, 1936–Sunset April 11, 2006.”
May 30, 2007: “Darlene Jenice Mason, age 43, of New Orleans was displaced to
Memphis, TN by Hurricane Kattrina.”
January 28, 2008: “Hi Vincent, Jeff Trepagnier here. Please add my father’s name to
your list of Katrina Victims. He died last night, January 27, 2008.”
The contrast between these memorial devices and vital statistics highlights the incon-
gruity created by the public imposition and circulation of statistics—what Theodore Por-
ter calls a “technology of trust”—as a truth constructed and witnessed by few yet imbued
with a moral quality of objectivity (Porter 1996). Death statistics—a device enrolled in
the search for general, comparable tendencies—mask the “truth” of the individual case.
As philosopher of science Anne Fagot-Largeault argues, medicine cannot ignore the
individual and history—hence the casuistry of physicians in contrast to the generalizing
science behind vital statistics (Fagot-Largeault 1989). Canguilhem’s (1989) assertion that
the contingencies of an individual death cannot be subsumed under the effects of general
laws works as a vitalist argument and corresponds empirically to the experience of those
confronted with the dying of others but facing authoritative counterproclamations about
deaths after Katrina. English lacks a language to express this distinction. In France,
which produced a science of mortality statistics in the nineteenth century, that difference
is manifest in the opposition between two nouns, mort and décès, both of which translate
as “death” in English (although “deceased” exists as noun and past participle). Deaths
5 66 • ANNE M. LOVELL
happen in the worlds of animals, vegetation, objects, words, and ideas. Décès, on the
other hand, is a notarial and vital-statistics term that has slowly crept into everyday lan-
guage where mort would be more appropriate, thereby neutralizing a human experience
through a language of authority.13 The singular death, Canguilhem writes, has been
transformed into the plural, “les décès” (Canguilhem 1989). The statistical wars in New
Orleans similarly materialize the work of distinction whereby epidemiological statistics
suppress the ambiguities and guesswork underlying them and mask the some ones—
forms of life preceding aggregation and irreducible to generalization.
The political potentiality of the citizenry’s pulse is ultimately deflected as the epide-
miological science of disaster unfurls a veil of objectivity over a messy biopolitical reality,
closing off a conversation on the agentivity of death, the violence of a supposedly natural
disaster, governmental responsibility, and the shrinking of public goods after Katrina.14
Thus far, I have emphasized a collective counternarrative through which deaths excluded
by administrative definitions are revived—a cumulative force of some ones’ deaths. I
propose not only that the production of obituaries and other local reports of death and
dying extend the event in time and place, replacing them within a popular (lay) causal
web of government abandonment and indifference, against the backdrop of a city in the
process of permanently eliminating its poorer and racialized segments (Lovell et al.
2011). I further propose that, beyond tracing a geography of blame, the production of
obituaries and other reports also nourishes local forms of communicability, a productive
capacity (Briggs 2005). In other words, publicizing loss, grief, and memory at once seeks
out and creates new and renewed links among the dispersed of the disaster’s aftermath.
Hence, the city is doubled by an archipelago of virtual and solid islands, Internet arenas,
and sites of everyday city life comprising numerous public spaces that permit crossings
and proximity of often-separated fellow travelers, strangers and nonstrangers alike—
lines along which affect flows.
On one level, this communicability resembles the spread of contagion, like the great
epidemics that take form in cities. Adi Ophir (2010), citing late-medieval and modern
plagues, in fact considers the city the true subject and hero of disaster.15 He argues that
modern catastrophes, or the crumbling of normal expectations about life and death
within a devastated population, can be articulated only in relation to populations. I sug-
gest, however, that the living fabric of the city cannot be presupposed after disaster. What
contaminates after Katrina, through communicability, is nothing less than affect (as the
depression, suicidality, and stories of death indicate), a dying from Katrina that simulta-
neously produces the very channels through which affect itself flows, both between
strangers and within morally cohesive but spatially dispersed communities. These sto-
ries assume contact, but virtual contacts—readers of newspapers (Lovell et al. 2011) or
commentators on the Internet—suffice.
Contagion depends on the similarities in and identifications with stories, as much as
on the uncanniness of falling sick or dying from Katrina—an affective quality that destabi-
lizes the listener. Someone too young to die “caught a stroke” after Katrina and went “just
F O R M S O F DY I N G : C O N T I N U I T Y A N D R E L AT I O N A L I T Y
If the affective quality of local expressions of grief and suffering creates proximity, the
appropriation of causes as a truth claim about another’s death also reinforces ties among
the living. To live, or “go on,” after loss from death, the living must fold the departed
into the mutuality of their existence.17 In Katrina’s aftermath, this process was filtered
through the work of distinguishing between a “good” and a “bad” death.
Katrina survivors abhorred the abandonment of their dead. In the above-mentioned
Sylvain online bulletin and other media, they contested the recovery and identification of
bodies. The federal DMORT unit left Louisiana before body identification ended, and dis-
organized handling of Katrina deaths met wide criticism. One group picketed the morgue
with placards reading “Free the Souls Held Hostage at the St. Gabriel Morgue.” Families
complained that loved ones, taken from them after dying, were subsequently lost (Dewan
2005). Others decried bureaucratic obstruction that violated corpses (“sitting” on them),
thus wronging the living: “We have been victimized by the hurricane, and now we are
5 68 • ANNE M. LOVELL
being victimized by the political system and medical investigators’ identification people
sitting on deceased bodies and doing nothing to release these death certificates.”
Abandonment reduces some ones to decomposed, personless bodies, animal-like
corpses. Questioning a death enables those left behind to absorb it by acknowledging
how that life was lived. For many New Orleanians, a good death is an accompanied form
of dying. It is expressed in active tense and metonymic language (people wake their dead,
bury them; the departed pass from the visible world to the invisible one). In the tradi-
tional jazz funeral, the accompaniers “cut loose” the body as the band shifts from dirge
to upbeat, often with humorously titled standards recalling the departed’s quirks and
character. Thus, witnessing the body of even a stranger who died alone or animal-like
produces shared grief and anguish, at once threatening and reconstituting the relational-
ity—kin based and anonymous—that constitutes the wounded city as a living body. Not-
good deaths might be corpses that the living saw floating in the waters, alongside dead
dogs and remnants of houses, or the body that died twice, when onlookers failed to stop
an army vehicle from running it over (Lovell 2013). “It’s not the way an individual like
that was supposed to go,” one man said of his ninety-year-old uncle, who died in a house
that flooded to the rooftop within minutes after the levee broke. “To go like that, drown-
ing like a rat, it’s terrible” (Dewan and Roberts 2005). Throughout Katrina’s aftermath,
survivors had transformed if not humanized bad deaths, through small, spontaneous
gestures: placing a photograph before the flattened house where a grandparent died,
covering a body abandoned on a sidewalk, burying a neighbor temporarily, until officials
could reach her.
A terrible Katrina-related end could also be redeemed through its transformation into
a divine death. The day of the flood might simply have been one’s “appointed time” to
leave earth and join God (Sontag 2005). And when a security guard told me, “God isn’t
finished with this city yet” as we listened to a news report about the rising murder rate
after Katrina, she meant divine intervention as a punishment that also extended the time
frame of disaster.
In noncatastrophic situations, New Orleans street traditions of Indians, second lines,
and the funeral rites for members of social and pleasure clubs (mutual-aid societies)
(Regis 2001) constitute routine types of accompaniment, though not all African-Ameri-
cans partake or even approve of them, and “white” New Orleanians increasingly com-
mercialize these traditions, hiring marching bands to play at private memorial services
or remembering well-known “white” public figures in funeral parades winding through
the city. Citywide funeral marches became important elements of Katrina commemora-
tive events and protests alike (Lovell 2011).
But the positive valence of death, maintaining the presence of those who have died, is
built into the body of the city itself. New Orleans incorporates “cities of the dead” (Flor-
ence and Florence 1997; Roach 1996) constructed for the living: cemeteries built close
to if not within residential areas, their monumental architecture, streets, and alleyways
mirroring the social and physical structure of the surrounding environment (Miller and
N OT E S
This chapter draws on research funded through a French Agence National de la Recherche
grant, ANR-07-BLAN-0008–02. It benefited from Veena Das’s and Clara Han’s highly insight-
ful comments; any shortcomings are my own. It also reflects valuable discussions with Rich-
ard Rechtman, Samuel Bordreuil, Sue Makiesky Barrow, Todd Meyers, and Helen Regis.
The epigraph is from Canguilhem 1989, xiii: “Death is something other than the necessary
effect of general causes at the level of an individual. ‘Someone’s death’ is a conjunction of
singular events that impose a finality on a life course that cannot be confused with the inevi-
table ‘common final pathway.’ ”
1. According to final Katrina excess mortality statistics, men and the elderly—but not
African-Americans—were disproportionately represented among the New Orleans dead.
Among the dead who could be identified, 63% were African-American, versus 67.9% of the
pre-Katrina number of African-American Orleans Parish residents, according to the 2004
census (Jonkman et al. 2009). (In Louisiana, parishes are the equivalent of counties elsewhere
in the United States.) However, these data do not take into account unidentified bodies and
missing bodies, which were most likely those of the poorest and the most marginal.
2. Survivors who evacuated prior to Katrina, and middle-class “white” survivors generally,
expressed disjoint agency—or assumptions of independence, individual motives, choice, and
control. Survivors who stayed and working-class African-Americans tended to focus on conjoint
agency—or interdependence with others and faith in God and in the labor of prayer (Stephens
et al. 2009).
REFERENCES
Asad, Talal. 1994. “Ethnographic Representation, Statistics and Modern Power.” Social Research
61:55–88.
Bordreuil, Jean Samuel. 2011. “New Orleans Post-Katrina: The Uses of the Web in Times
of Crisis.” Metropolitics, June 24. www.metropolitiques.eu/New-Orleans-Post-Katrina-the-
Uses.html.
Briggs, Charles L. 2005. “Communicability, Racial Discourse, and Disease.” Annual Review of
Anthropology 34:269–91.
Brunkard, J., G. Namulanda, and R. Ratard. 2008. “Hurricane Katrina Deaths, Louisiana,
2005.” Disaster Medicine and Public Health Preparedness 2 (4): 215–23.
Burnham, Gilbert, Riyadh Lafta, Shannon Ducey, and Les Roberts. 2006. “Mortality after the
2003 Invasion of Iraq: A Cross-Sectional Cluster Sample Survey.” Lancet 368 (9545):
1421–28.
Canguilhem, Georges. 1989. Preface to Les Causes de la mort: Histoire naturelle et facteurs de
risque, by Anne Fagot-Largeault, i–xviii. Paris: Editions Vrin; Lyon: Institut Interdisci-
plinaire d’Études Épistémologiques.
Das, Veena. 2002. “Violence and Translation.” Anthropological Quarterly 75 (1):105–12.
Dewan, Shaila. 2005. “Chief of Louisiana Morgue Says Pace of Work There Is Accelerating.”
New York Times, October 15. http://www.nytimes.com/2005/10/15/national/national
special/15morgue.htmlhttp://www.nytimes.com/2005/10/15/national/nationalspecial
/15morgue.html.
Dewan, Shaila, and Janet Roberts. 2005. “Louisiana’s Deadly Storm Took Strong as well as
the Helpless.” New York Times, December 18. http://www.nytimes.com/2005/12/18
/national/nationalspecial/18victims.html.
Bhrigupati Singh
In the past few decades the interest in hunger artists has declined considerably.
The political drama over the 20 “starvation deaths” in the last two months among
the Sahariya tribes of Rajasthan is dying. . . . “It took the death of my sons for
people to wake up. I think the good times will last for at least a few months,” says
Noori Lal in his spartan hut in Brahmpura village, 350 km south of Jaipur. And
slowly, everyone in Brahmpura is coming to believe that a death is good. “It gets us
immediate attention, we get food, money. Otherwise, who cares?”
Hunger can take different forms. Voluntary hunger can be a form of self-fashioning, as
aesthetic or ascetic striving. Alternatively, in disorders such as anorexia nervosa, the line
between voluntary and involuntary hunger, between self-creation and self-destruction,
may become blurred, as several authors have shown.1 Fasting may be a private act, but it
can also take public, political forms—a theme I previously approached in relation to a
gifted hunger artist, Gandhi (Singh 2010; see also Alter 2000). In this chapter I want to
take up another, familiar sense of hunger, as a collective crisis of food, manifest in events
such as famines and in less eventful forms such as endemic scarcity. In what ways does
hunger become an event or a nonevent? What might it mean to retain an interest in
uneventful forms of hunger?
In the pages ahead I briefly review the anthropological literature on the everyday life
of hunger, in famine, drought, and endemic scarcity. Then, drawing on my ethnographic
fieldwork in rural central India, I discuss a slow-moving crisis of food and water that
subsists and intensifies long after newsworthy narratives of culpability and horror seem
to be over. The anthropology of living and dying, as I see it, differs from the news precisely
576
in that the calamities it reports are not dramatic but endemic. I will end by asking what
this relationship between food and water—one that moves us beyond a straightforward
conception of hunger as a lack of food—may teach us about our conceptions of life, and
living and dying.
A B R I E F H I S TO RY O F H U N G E R
Kafka’s story of the waning popularity of the hunger artist suggests a provocative ques-
tion: Can there be a viewing public for hunger, and what happens when this public loses
interest, as publics sometimes do? In Hunger: A Modern History (2007), James Vernon
argues that the possibility that hunger, of near or distant others, can be an object of sym-
pathy and of institutional intervention is a relatively recent phenomenon, dating roughly
to the mid–nineteenth century, with the emergence of a particular modern sensibility.
Focusing on imperial Britain, Vernon describes two ways of perceiving hunger that had
to recede (or partially recede) for hunger to emerge as an object of sympathy. The first
was a theological sense of hunger as divine punishment. The second, a secularized vari-
ant of this view, was the Malthusian sense—the dominant view in the early nineteenth
century, according to Vernon—of hunger as providing a natural basis for moral order in
forcing the indigent to work and preventing overpopulation (17). This “dismal science of
political economy” (18), as Vernon calls it, inspired the 1834 New Poor Law, which curbed
poor relief and led to the creation of British workhouses. Significant internal political
opposition emerged in relation to the New Poor Law. More than this opposition though,
what most forcefully enabled the emergence of hunger as a humanitarian subject, accord-
ing to Vernon, was a new type of British news reporting centered on the workhouses. As
Vernon puts it: “Hunger first became news in the 1840s” (14). It was the “personal stories
about helpless starving children, the anguish of a mother unable to make ends meet to
feed her family, or even, later, the plight of the industrious but unemployed working-
man—[that] helped establish the moral innocence of the hungry as victims of forces
beyond their control” (18). How did this emerging mode of perception relate to hunger
in the colonies?
In “Famine in the Landscape: Imagining Hunger in South Asian History, 1860–
1990,” Darren Zook emphasizes the centrality of hunger to the early Indian nationalist
imagination. The best-known text in this genre of Indian nationalist writing is Dadabhai
Naoroji’s Poverty and Un-British Rule in India (1901). As is well known to students of
South Asian history, while Naoroji was one of the founders of the Indian National Con-
gress, at this stage elite nationalist thought was not necessarily anticolonial. Naoroji’s
text is an exhortation to the British to follow principles of liberal government, “to care
for the people of India, to save them from famine, and to ease them out of poverty”
(quoted in Zook 2000, 119). Spurred by a sequence of famines in various Indian states
between 1860 and 1877, and by debates in Britain and in India (that also predate Naoro-
ji’s text) on the form that British rule ought to take, colonial authorities sought to codify
Anthropologists of hunger, such as Kirsten Hastrup (1993), lament the paucity of writings
in this field, which Hastrup suggests has to do with the anthropological emphasis on well-
functioning social systems and structures rather than on suffering (727). Nancy Scheper-
Hughes (1992) puts the issue more polemically, arguing that anthropology has been
complicit in a “denial of the plain fact of hunger as a lived experience” (132). That said,
there is a discontinuous trail of anthropological engagements with hunger, some signposts
of which we might glean, even from Scheper-Hughes’s own book, among other summa-
ries.2 For several anthropologists of food, Audrey Richards’s 1939 study of the Bantu and
Bemba tribes of Southern Rhodesia (now Zimbabwe) is the starting point for the anthro-
pology of hunger. Working with botanists, nutritionists, and biochemists, Richards exam-
ined women’s increasing undernutrition, as the men were drawn away from seasonal tasks
and from earlier forms of agricultural labor to employment in British-owned mines
(Messer 1984, 208). Richards also demonstrated how kinship obligations and culturally
prescribed rules of sharing could break down in times of dearth (Messer 1984, 209).
For Scheper-Hughes even more than Richards, it is Colin Turnbull’s book The Moun-
tain People (1972) that “broke the taboo of silence against hunger in anthropology”
(Scheper-Hughes 1992, 132), with his chilling account of a drought in Uganda and the
collapse of all social norms of care and reciprocity among the Ik tribe, former hunters and
gatherers forced to resettle as agriculturalists after the establishment of the Kidepo
National Park in colonial Uganda. Turnbull describes how Ik individuals fought for their
lone survival, against all competitors including their own parents and children (132).
According to Scheper-Hughes, Turnbull’s ethnography was discredited by Africanist col-
leagues as having exaggerated the situation, although for Scheper-Hughes it continues to
have strong resonances with her own ethnography and with accounts of other societies in
calamity, including Europe during times of extreme deprivation (133).
Approaching such contexts of deprivation, we might notice two related trajectories in
the anthropology of hunger. The first, as with Richards and Turnbull above, describes
the breakdown of social relations—including, at times, at the intrahousehold level—dur-
ing periods of scarcity.3 This is not a cultural peculiarity found only by Africanist ethnog-
raphers. In India, Paul Greenhough (1982) analyzes the Bengal famine of 1943–44,
described by many analysts as the last large-scale famine in India. Here, colonial culpabil-
ity was particularly strong and perceived as such by the nationalist movement, since,
partly because of wartime pressures on the British, Famine Code norms were ignored
and “the famine was simply not declared” (Dreze and Sen 1990, 16). In this context
Greenhough asks how household decisions were made on who would get to eat in a
situation of scarcity. Through mortality data and archival work, Greenhough finds that
the nutrition of men was perceived as the moral priority, in order to secure the survival
of the lineage and society, which led to the conscious deprivation of women, children,
In a recent book, Ash in the Belly: India’s Unfinished Battle against Hunger (2012), Harsh
Mander points out that even as India is touted as an emerging power, said to have overcome
large-scale famine, it is also home to 42% of the world’s underweight children (Mander
2012, 19). And further, if starvation were to be defined as a daily intake of less than sixteen
hundred kilocalories, described by nutritionists as the minimum requirement to keep the
human body functioning, then 17% of Indians grapple with starvation as an element of
daily living (21). When starvation appears in the news nowadays, though, the term is often
contested. As Mander puts it: “The pattern is monotonously, soullessly uniform: sensa-
tional media reports, agitations by local activists, angry denials by government officials
suggesting illness or natural ageing to have caused the deaths, and attacks on the govern-
ment for its failures by a usually slothful political opposition. The dust rapidly settles, as
the desperate forgotten survivors of the dead, sometimes without any living adult earning
member, struggle to somehow continue to live” (175).
One such controversy began in 2002, in the subdistricts of Shahabad and Kishanganj,
in the Baran district of Rajasthan. In early 2002 all thirty-two districts of Rajasthan were
declared drought affected. In October 2002, after reading sporadic reports in the Hindi
news media about starvation deaths, a five-member team from the People’s Union for
Civil Liberties (PUCL, Rajasthan) visited Shahabad. The team reported eighteen starva-
tion deaths among the Sahariyas, a “Primitive Tribal Group” (a subcategory within
“Scheduled Tribes”) in Shahabad and Kishanganj. The PUCL team sent a letter to the
chief minister of Rajasthan demanding intensified government intervention in the area.
PUCL also filed a public-interest litigation in the supreme court of India, claiming state
negligence as regards famine relief: “The country’s food stocks reached unprecedented
levels while hunger intensified in drought-affected areas and elsewhere” (Right to Food
2002b, 1). This litigation was joined by NGOs across six Indian states, describing food
security situations comparable to Shahabad and Kishanganj, even in non-drought-
affected areas, beginning the national Right to Food campaign (Khera 2006). A flurry of
news reports followed on the Sahariyas in the English-language press, including an arti-
cle in the New York Times, “India’s Poor Starve as Wheat Rots,” said to be a major embar-
rassment for the Indian government. A political controversy flared up between rival
parties—the Congress (I) in power at the Rajasthan state government level and the
Bharatiya Janta Party (BJP), the central government at the time—over the respective
misuse of funds.
How does a crisis end? In November 2002, a disaster-response manager from the
global NGO Doctors without Borders assessed eight villages in Shahabad and Kishanganj,
detecting “pockets of malnutrition” (Quinn 2003, 2). Following a reassessment three
months later, the end-of-mission report tells us that the crisis is now over: “It can be
presumed that the huge influx of relief programs undertaken through Government bod-
ies has effectively reduced the prevalence of malnutrition” (Quinn 2003, 8). Journalists
The Nagar (OBC) wanted to be included in the “muster roll” (labor payment record) for
the drought-relief work so he could be paid although he hadn’t done a day of work. Even
they (the OBCs) were in difficulty at that time. He thought he could just bully the Sahariya
meth (labor manager) and got violent when he was refused. The police always side with
the Nagars. A complaint was filed, but they released him in a few days. Kalli organized a
massive rally in front of the police station. People from about 150 to 200 villages partici-
pated in a nine-day protest. The Nagar man was finally arrested and charged.
With Kalli I came to sense that the vulnerabilities of those dear to her had spurred her
to explore new regions of strength. Her own memory of the drought was of a kind of
purposeful intensity that she and others around her had felt at the time. She had never
worked for an NGO or any institution before that and knew no form of life other than
agricultural labor. She first joined Sankalp as a temporary replacement for a relative.
bhrigu: In the first drought year, you had just started working for Sankalp?
kalli: I joined once before, but I left because I was felt udaasi [sadness] at having to
leave my family and keep traveling to other villages.
b: So then why did you rejoin?
k: During the drought he [her husband, whom I also came to know] and I once
fought to the death [lad mareya]. [Laughs]
b: What was the fight about?
k: He was ill. I said, “Why aren’t you getting treated? What are you saving
the money for?” “Don’t ever talk about money,” he snapped, and slapped
me twice. I was so angry I didn’t eat for three days. [Laughs] So then in
anger I left to work with Bhenji [Charu, at Sankalp]. This was during the
drought.
This was a particularly intense time to join Sankalp. This time around, rather than
sadness, Kalli felt something else:
This period of intensity brought forth capacities that might otherwise have remained
latent in Kalli—her ability to bring people together, to fight and make demands on those
who wield institutional power—many of the qualities that her colleagues in Sankalp
came to admire, and that continue at present as she heads a human rights center in
Baran.
Governmental and nongovernmental relief initiatives are often criticized as palliative
measures that ignore longer-term issues of scarcity and inequality. In this instance,
though, through the time of my fieldwork and after, a host of longer-term measures
seemed to be emerging. Inhabiting life in Shahabad after the newsworthy disaster, I
found that another common postmortem contention, particularly on the part of neigh-
boring middle and upper castes, was that the akaal (drought) had turned into a sukaal
(period of grace) for the Sahariyas. Before 2002 only 25% of Sahariya families had official
Below Poverty Line (BPL) status. As a result of the starvation-deaths controversy, all
Sahariya families had been declared BPL, which entitled them to thirty-five kilograms of
government-subsidized wheat every month, to be bought from the local Public Distribu-
tion Service shop, at the rate of two rupees per kilogram. Large budgetary allocations
were announced for new development programs. Scores of new NGOs had mushroomed
in the area. The precise number of NGOs now serving Shahabad and Kishanganj was
disputed, but the most popular figure was 217. Most of them are just “shops for profit,”
I was told. That said, not all such measures were an eyewash.
Rather than being a straightforward story of neoliberalism, these were also the years
when the first glimmerings of welfare-state-like provisions were being tried out in India,
with the Employment Guarantee Act, the Right to Food, and other such initiatives. With
local NGOs such as Sankalp being closely connected to wider activist circuits, a vigilant
local media, and a government apparatus on high alert, Shahabad became a kind of
laboratory for many of these welfare experiments. Educational initiatives had long been
part of the state development apparatus in Shahabad. And for those who were unlettered,
a large-scale JFM (Joint Forest Management) project was under way to “restore” the for-
ests to forest-dwelling tribes. Through famine-relief-like labor such as digging trenches,
unappealing as that sounds, the JFM projects also aimed to provide one hundred days of
employment to Sahariyas families, as part of the Employment Guarantee Scheme, to
make up for periods of scarcity in the annual labor cycle. With all of these initiatives
under way, was the crisis now well and truly over? I gradually realized that if one thinks
of food and water as interrelated, then a different kind of crisis was just beginning, below
the threshold of disaster.
A S L O W- M O V I N G C R I S I S B E L O W T H E T H R E S H O L D O F D I S A S T E R
When did the difficulties with water begin? “Jab nadi-talaab toot gaye [When the streams
and ponds “broke”—i.e., dried up].” Until recent decades Shahabad would have been
described as a relatively lush forest area. The water-related difficulties began in the last
twenty years, “once everyone began to use tube wells and pump sets,” I was told. At one
level this is a “natural” shift toward mechanized agriculture. What is not natural or nec-
essary, although it may seem so, is a seemingly minor dietary shift that I began to pay
attention to in the course of fieldwork, from millets to wheat—which is, I found, a some-
what subterranean cause at the heart of the emerging water shortage, here and in many
other parts of the world. I came to Shahabad drawn by a newsworthy form of hunger.
Living here, I became interested in a less newsworthy, everyday anxiety around water.
These phenomena, it turned out, were not unrelated if we look to an issue that has
long interested anthropologists—namely, what constitutes food. What kind of food is
indicative of hunger, or of plenty?
It was common knowledge, although it came to me late, that in these parts of north-
ern and central India, wheat, seemingly a staple and ubiquitous grain at present, was an
expensive, relatively rare and coveted food item until as recently as twenty years ago.
Until a generation earlier, everyday diet was strongly differentiated across castes in Sha-
habad. How would we understand this differentiation? Scholarly writings on Hindu
dietary practices have often focused on questions of vegetarianism, transactional purity
(Dumont 1980, 130), and ascetic ideals of self-control (Khare 1992, 27). Slightly differ-
ently, I began to get interested in contrasts that surfaced even when a dietary norm was
shared by low and high castes. These contrasts could not be arranged into hierarchies of
“purity,” for instance, with vegetables. Middle castes such as Kiraads and Ahirs ate few
or no vegetables. “Their staple was lapta and maheri [types of porridge] with curd or ghee
[clarified butter], since they own so many cows,” was how Kailash, my closest friend in
the area, described it. Kailash, in his late thirties, belonged to the low-status (SC) Chamar
caste, and worked for my host, NGO Sankalp. Vegetables were more regularly consumed
by the highest castes such as Brahmins and Baniyas and by the lowest, such as Sahariyas
and Chamars. Qualitative differences between “high”- and “low”-caste diets were often
How do we understand crisis with respect to water? Government criteria for crisis evalu-
ation are based on groundwater-balance estimates—the ratio of extraction to recharge,
called E/R estimates. Environmentalists argue that E/R estimates are unreliable, since an
important factor is water quality, not just volumetric availability (VIKSAT 1993, 10). These
uncertainties notwithstanding, E/R percentages may be used to signal levels of danger
as regards groundwater extraction—below 70% (secure), 70%–90% (borderline moder-
ate to high), 90%–100% (high), and above 100% (dangerous). In the most recent study
of groundwater levels in the region, Shahabad was measured to be at the relatively secure
level of 42%. In the more “developed” neighboring subdistricts, E/R danger levels gradu-
ally increase: Chippabarod (88.52%), Anta (99.18%), Atru (104.72%), and Baran (113.38%)
(Government of Rajasthan 2006, 22). While Shahabad is more secure than its immediate
neighbors at present, over the last two decades the groundwater level in Shahabad has
5 90 • BHRIGUPATI SINGH
also dropped significantly from an average of 5.9 meters in 1984 to 8.62 meters in 2005
(Government of Rajasthan 2006, 28).
In “Green Revolution and Desertification” (1986) Vandana Shiva and Jayanta Ban-
dyopadhyay describe “aquifer drought” brought on by “exponential growth in water
usage” (340). In contrast, Shiva and Bandyopadhyay argue, “indigenous cropping pat-
terns” reduced vulnerability to drought with a low demand for water, mixed cropping,
and high organic-matter production (344). In Shahabad I never found cultivators exalting
traditional agriculture. Instead, the narratives of older cultivators centered on the much
more intense physical labor required in earlier times, as well as the prohibitive taxes from
which they were now thankfully exempt. And yet, most cultivators at present live with a
sense of threat, and of an ongoing and impending crisis, of increasing “desertification”
even in formerly lush areas, in addition to widespread fears regarding the rising costs of
seeds and fertilizers, which have resulted in increasingly smaller profit margins.
Environmental and socioeconomic critiques occasionally rely on an inadequate pic-
ture of people’s desires. For instance, somewhat differently from Shiva and Bandyopad-
hyay above, we might ask, What attraction did these new technologies exert on a mass
scale that led them to be adopted? A simple answer would be the economic benefits. This
is not the end of the story, though, as we see with Mangilal or any small-scale cultivator
who may have a waxing and then severely waning trajectory with these technologies.
Rather than a commonsensical idea of economic self-interest, I will emphasize a differ-
ent kind of value, somewhere between the necessity of overcoming hunger and the aspi-
ration to eat “well,” to do with the demotion of millets as a coarse “poor man’s” food and
the rise and redistribution of “finer” wheat. Tastes and values such as coarse and fine
may seem like a minor footnote in the agrarian dramas of the twentieth century. How-
ever, I want to suggest that these more ephemeral values, not necessarily imposed on
“indigenous” ways of life by policy fiat or economic incentives, are also involved in these
processes of desertification.
Consider again the empowering aspect of wheat as the food item through which
hunger is overcome. Most Sahariyas and other castes in Shahabad ate wheat only a few
times a year until even twenty years ago—for instance, bonded laborers who received a
fistful of wheat during a festival, or, as we saw with Rajnish above, even the high-caste
Rajput family in which the younger brothers would look on jealously at their elder broth-
er’s “richer” plate. Now the poor eat wheat every day. Would they (or “we”) agree to
restore millets to our diets? This depends on the value ascribed to millets, values that
might be changeable. This is not a difference between Western versus indigenous per-
spectives. Wheat is in no way foreign or new to India (Evenson 2004, 548). Nor are all
“traditional” millets necessarily indigenous. Millet researchers tell us that pearl millet
(bajra), “traditionally” consumed in so many parts of India, is a relatively recent entrant
into South Asia, introduced roughly six centuries ago by migrants and invaders from
West Asia (ICRISAT 1975, 23). Accepting these tectonic movements, we might instead
focus on how life (understood here as a sense of vitality and plenitude) waxes and
5 92 • BHRIGUPATI SINGH
of nutrition. A postindependence study of Shahabad in 1961 declares that the inhabitants
live on a “forest diet,” composed primarily of “inferior millets” (Government of Rajasthan
1964, 23). The recent, slightly belated scientific consensus on millets is that their “nutri-
tional content is no less than the fine grains and superior in certain constituent ele-
ments” (Survey of Indian Agriculture 2004, 38). In recent years, Indian agricultural sci-
entists have decided to drop the labels “inferior” and “coarse,” and are encouraging the
adoption of the more positive term “nutritious cereals” (Survey of Indian Agriculture
2004, 37). Scientists, however, recognize the critical “social” dimension of the problem:
millets are considered a “poor man’s food,” and consequently there is “a shift away from
coarse cereals due to changing food preferences” (ICRISAT 1993, 94).
In examining this shift in Shahabad, we see that tastes are not entirely dictated by
governmental policy. Policies in turn may express social prejudices and values. Even
lower in value than jowar and bajra were other millets that have entirely disappeared from
the area, kodo and raali (“small” millets common in various parts of Asia and Africa)
(Seetharam et al. 1986, 25). Lower-caste men would often tell me their memories of
small millets from earlier decades. “We grew it in the dhaanda [dry land]. My father liked
it, but I just couldn’t eat it. It was too khiss-khissi [(dry/coarse/hard to swallow],” Kailash
said. The word khiss-khissi (“coarse”) expressed a visceral revulsion that was not necessar-
ily ideological. One may gradually learn or unlearn a “traditional” diet.
Is it possible to eat without injuring life? The question is what kind of injury may be
preventable. When I spoke enthusiastically about readopting millets, I was warned by
some in Shahabad, “You’ll fall sick if you eat it every day.” They added informatively, “I
can’t shit if I eat bajra for three days in a row.” If millets are to make a return, perhaps
they will have to reemerge as a more “cultivated” taste, rearranged in hierarchy and value,
and mode of preparation. Some with more radical political tastes may scoff at such minor
“lifestyle” changes. On a larger scale, though, a sympathetic reinvitation of millets into
global diets may have more beneficial environmental and social consequences than many
of the more newsworthy revolutions of the twentieth century. Simply put, if consumed
on a large enough scale, say, by the upper and middle classes worldwide, even once every
three days, millets have the potential to gradually regenerate the water table, perhaps
preventing the water wars of the future.12
C O N C L U S I O N : T H E Q U A L I T Y O F L I F E , AT VA RY I N G
THRESHOLDS OF LIFE
The decline of millets is not limited to Shahabad. Even a cursory glance at statistics
informs us of the number of states across India where millet consumption is waning.
Further, in China, the millet area has been decreasing at the rate of 6.5% annually since
1970 (ICRISAT 1993, 99). Still further afield, we learn that the colonial officers who
described these grains as “coarse” were not speaking without a cultural memory of their
own. Millets were “the principal foods of the poorer people of ancient Rome and Europe
5 94 • BHRIGUPATI SINGH
NOTES
REFERENCES
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of Pennsylvania Press.
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International Conference on Rajasthan, Institute of Rajasthan Studies, Jaipur, December
29–31.
de Waal, A. 1989. Famine That Kills: Darfur, Sudan. New York: Oxford University Press.
———. 1997. Famine Crimes: Politics and the Disaster Relief Industry in Africa. Bloomington:
Indiana University Press.
Devereux, S., ed. 2007. The New Famines: Why Famines Persist in the Era of Globalization.
London: Routledge.
Dreze, J., and A. Sen. 1989. Hunger and Public Action. Oxford: Clarendon Press.
———. 1990. The Political Economy of Hunger. Vol. 1. Oxford: Oxford University Press.
Dumont L. 1980. Homo Hierarchicus: The Caste System and Its Implications. Chicago: Univer-
sity of Chicago Press.
Eli, K., and S. Ulijaszek. “Anorexia Nervosa.” Oxford Bibliographies Online. Accessed on March
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9780199766567–0116.xml.
Evenson, R. E. 2004. “Food and Population: D. Gale Johnson and the Green Revolution.”
Economic Development and Cultural Change 52:543–69.
Government of Rajasthan. 1964. Recent Developments in Rajasthan. Symposium on Problems of
Indian Arid Zones. Jodhpur: Ministry of Food and Agriculture and Central Arid Zone
Research Institute.
———. 2003. District-Wise Statistical Outline, Baran District. Jaipur: Department of Econom-
ics and Statistics.
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———. 2004. Baseline Survey and Study of the Sahariyas of Shahbad and Kishanganj Tehsil.
Udaipur: Tribal Research Institute.
———. 2006. Jal Manthan. (Booklet to accompany Water Conservation Campaign, Baran
District.) Baran: District Administrative Office.
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Oxford University Press.
Gupta, A. 1998. Postcolonial Developments: Agriculture in the Making of Modern India. Durham,
NC: Duke University Press.
Hastrup, K. 1993. “Hunger and the Hardness of Facts.” Man, n.s. 28, no. 4 (December):
727–39.
IARI. 1968. Five Years of Research on Dwarf Wheats. Indian Agricultural Research Institute.
New Delhi.
ICAR (Indian Council for Agricultural Research). 1976. Wheat Research in India, 1966–1976.
New Delhi.
———. 1988. Major Crop Production Constraints and Their Remedial Measures in Different Agro-
Climactic Zones of India. New Delhi: ICAR, Division of Agronomy.
ICRISAT (International Crops Research Institute for the Semi-Arid Tropics). 1975. Millets:
Importance, Utilization and Outlook. Edited by K. O. Rachie. Hyderabad.
———. 1993. Sorghum and Millets: Commodity and Research Environments. Edited by David E.
Blyth. Hyderabad.
Jodha, N. S. 1986. “Common Property Resources and Rural Poor in Dry Regions of India.”
Economic and Political Weekly 21 (27): 1169–81.
JSA Hunger Watch 2003. “Guidelines for Investigating Suspected Starvation Deaths.” Accessed
March 1, 2015. www.righttofood.com.
Kafka, F. 2011. A Hunger Artist. Translated by Kevin Blahut. Prague: Twisted Spoon
Press.
Khare, R. S., ed. 1992. The Eternal Food: Gastronomic Ideas and Experiences of Hindus and Bud-
dhists. Albany, NY: SUNY Press.
Khera, R. 2006. “Political Economy of State Response to Drought in Rajasthan, 2000–03.”
Economic & Political Weekly, December 16, 5163–72.
Kodesia, J., ed. 1975. Wheat in India. New Delhi: Indian Agricultural Research Institute.
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Kotah, subject no. 16, compilation no. 3, basta no. 22.
———. 1900. “Final Famine Report by Mr. Bonnar.” Mahakma Khas Kotah, subject no. 16,
compilation no. 36, basta no. 22.
Lansing, S. 1991. Priests and Programmers: Technologies of Power in the Engineered Landscape of
Bali. Princeton, NJ: Princeton University Press.
Mander, H. 2012. Ash in the Belly: India’s Unfinished Battle against Hunger. Delhi: Penguin
Books.
Messer, E. 1984. “Anthropological Perspectives on Diet.” Annual Review of Anthropology
13:205–49.
Mintz, S. W., and C. M. Du Bois. 2002. “The Anthropology of Food and Eating.” Annual Review
of Anthropology 31:99–119.
Naoroji, Dadabhai. (1901) 2000. Poverty and Un-British Rule in India. London: Routledge.
5 98 • BHRIGUPATI SINGH
34
“TIBET ON FIRE”
Self-Immolation, Affect, and the Global “N of 1”
Vincanne Adams
During the summer of 2012, the policemen walking in the cities of Tibet began to carry
fire extinguishers in case they encountered Tibetans who had set themselves on fire.1
The recent and, as of the writing of this chapter, ongoing epidemic of self-immolations
in Tibet is cause of “unspeakable sadness” (J. Gyatso 2012). Not without historical prec-
edent, the suicides nevertheless disrupt any easy categorization or explanation, and yet
they seem to produce the opposite of unspeakability; if anything they speak too much,
say too much, even while leaving unanswered the question of what they accomplish.2
Today, social theory and human rights campaigns are similarly challenged to translate
the political suicide in ways that attend to the efficacy of its speech while simultaneously
avoiding its escalation. In this chapter, I explore how different strategies of evidence
making about these deaths—namely, the use of affect and enumeration—work in relation
to both translation and performance of self-immolation suicide in Tibet, in order to not
just understand this tragedy but also contemplate what might be done to end it.3
Since 2009, there have been over 130 Tibetans who have set themselves on fire,4 and the
number increases as I write. Despite the fact that Tibetan culture has no tradition of either
suicide or political martyrdom,5 few observers outside of China dispute that Tibetan self-
immolations are motivated by political causes stemming from sixty years of perceived
occupation of Tibet.6 In all cases, the immolators called out their rationale. They offered
599
anti-Chinese sentiments alongside praise and hopes for the long life of his holiness the
Dalai Lama, asking him to return to Tibet. They raised Tibetan flags and shouted inde-
pendence slogans before swallowing gasoline and setting themselves ablaze. One of the
immolators, a mother in her early thirties named Rinchen, was reported to have shouted:
“We need freedom!” before lighting herself on fire. One monk from eastern Tibet
explained before he died that he had been banned from making a religious ceremony and
that he had openly objected to a rigorous “patriotic education” campaign at his monastery.
When I asked my Tibetan colleague Tenzing Norbu about why so many Tibetans were
self-immolating, he said, “I ask this question also: From where did they get this idea . . .
that if they sacrifice themselves there will be an improvement? Tibetans learned this
from outside of Tibet,” he said. “They learned from the Chinese, from living in China.
They think that if more and more people do this, it will get more attention.”
“Attention from whom?” I asked.
“Attention from China, from Western countries, Western people.”
“Will this work?” I asked.
“Like in Vietnam,” he answered. “When the monk set himself on fire . . . was it effec-
tive? I think so. If there is only one, then maybe only a few people will notice. But if there
are so many, I think they will pay attention. They will do something. They will change
their minds.”
Tenzing reminds us that the historic cases of self-immolation (in Vietnam, and in
Tunisia more recently) point to a human rights efficacy that is, in part, what inspires the
Tibetans. The conditions that make Tibetans feel that suicide as a gesture in response to
perceived human rights violation is the best way to voice their political concerns are, I
believe, tied to how Tibetans envision making their voices heard by escalating their num-
bers.7 These concerns take us to the heart of problems of enumeration and affect as
generative modalities for the production and circulation of evidence in human rights
work.
Elsewhere I have been writing about the dynamics of evidence making in and around
both an affect economy and a politics of enumeration. (Adams 2013a, 2013b). Briefly, I argue
in these works that enumerative logics that prevail in global humanitarian and develop-
ment programs advance evidence-based auditing and accountability practices that rely
on statistical reasoning and (sometimes) experimental platforms (frequently with the
randomized controlled trial as the gold standard). I argue that these enumerative logics
cannot encompass certain cultural realities and conditions, even though these realities
and conditions still matter in a life-and-death sort of way. Some things cannot be appre-
hended using the tools that produce robust power calculations or even simple statistical
facts. Sometimes the numbers can’t be found, and sometimes things cannot be counted.
Sometimes counting can do harm.
I believe that some truths are better apprehended through strategies that rely on evi-
dence of affect—emotional and ethical sensibilities that structure feeling and condition
behavior. Affective evidence includes kinds of media that fall outside the enumerative
60 0 • VINCANNE ADAMS
field—the anecdotal, the case study, narrative testimonials, illustrations, and other aes-
thetic forms (such as photography and video)—which give rise to an emotional sense of
urgency to act. Human rights activism has traditionally used strategies of both affect and
enumeration. In turning to Tibet, I want to explore how both affect and enumeration
enter into problems of what Veena Das has called “ordinary ethics” that in large part
define the Tibet–China crisis. I argue for a heuristic that attempts to theorize affect in
order to interrogate how logics of enumeration enter into and may even contribute to the
problem of escalating self-immolation, or, as Tenzing noted, to the belief that if more
Tibetans self-immolate, people will change their minds. I argue that the work of affect,
in contrast, may better help constitute a space for ethical refashioning and even political
change.
T R A N S L AT I O N S I : S E L F - I M M O L AT I O N A S A N I N D I C ATO R O F
H U M A N R I G H T S V I O L AT I O N S
T R A N S L AT I O N S I I : T H E V I RT U O U S D E AT H
Watching the immolations grow from one to many from outside of Tibet, many Tibetans
living in exile have been in mourning. They have canceled religious celebrations. They
perform circumambulations around prayer wheels and monasteries in their new exile
homelands and pray for the speedy and fortunate rebirth for the Tibetans who have died.
They talk endlessly about the escalating numbers and the tragic illogic of it all. Among
their greatest concerns is the question, How can the self-immolators be praised for their
political sacrifice if they have done something that is essentially unvirtuous? Buddhism
forbids suicide—a presumption that is based, foundationally at least, on the idea that as
a form of killing, it causes harm not only to the being who dies but to all the other beings
who are affected by it.12 Suicide, in other words, is usually not a success but a failure of
virtue. This tragedy is doubly felt among Tibetans when they note that the majority of
those self-immolating have, in fact, been monks and nuns who are subsequently called
“heroes” by many who remain behind.13 Thus, the second essential translation of self-
immolation is that in order for it to “succeed” it must be transformed from an act that is
morally bereft into an act that is virtuous in both a political and a Buddhist sense.
Thupten, a Tibetan friend who was raised in Tibet but is now living in the United
States, explained this to me in the following way:
60 2 • VINCANNE ADAMS
Self-immolations are not good because if they [the immolators] die and are full of sadness,
negative emotions, and attachment while they are dying, they create a bad situation for
their next life. You know, even the Buddha . . . the scripture talks about how the Buddha
gave up his body to take care of a tiger who was starving and could not feed her cubs. So
this idea of sacrifice for the benefit of other beings is not new. It is there, in Buddhism. But
most of these young people, they do not have the skill they need to do this sort of sacrifice
correctly. Normally, it takes many years of meditation and training. Normal people, most
people, if they are suicidal, they have a lot of sadness, attachment, anger when they die.
Young people in Tibet, many . . . most of them, even if they are monks, are they educated?
Not really, and if they are not then they have a lot of sadness, anger, and hatred at the
moment they die, even hatred for the Chinese. Then that is not positive. From the perspec-
tive of Buddhism, from the perspective of religion, it matters.
It is partly for these reasons that many Tibetans met the shocking news of self-immo-
lation of a high-ranking lama named Soeba with a kind of tragic relief. Lama Soeba, the
roughly thirty-eighth self-immolator in Tibet, recorded his intentions on videotape before
taking his life. He said:
This is the twenty-first century, and this is the year in which so many Tibetan heroes have
died. I am sacrificing my body both to stand in solidarity with them in flesh and blood, and
to seek repentance through this highest tantric honor of offering one’s body. This is not to
seek personal fame or glory. I am giving away my body as an offering of light to chase away
the darkness, to free all beings from suffering, and to lead them—each of whom has been
our mother in the past and yet has been led by ignorance to commit immoral acts—to the
Amitabha, the Buddha of infinite light. My offering of light is for all living beings, even as
insignificant as lice and nits, to dispel their pain and to guide them to the state of enlight-
enment. I offer this sacrifice as a token of long-life offering to our root guru His Holiness
the Dalai Lama and all other spiritual teachers and lamas. [Lama Soeba recites the Prayer of
the Mandala Offering.]
. . . All the Tibetan heroes too have sacrificed their lives with similar principles. But in
practical terms, their lives may have ended with some sort of anger. Therefore, to guide their
souls on the path to enlightenment, I offer prayers that may lead all of them to Buddhahood.14
When I asked Thubten about Lama Soeba’s death, he explained that it was like a
“moral correction” for the others: “Lama Soeba . . . did [self-immolation] in a different
way. He left a message for his monastic people and his followers and he said, ‘I dedicate
my life to the peace of the Tibetan people and Chinese people and the whole world, all
sentient beings.’ So it seems to be that if he really did while he is dying, his motivation
is peaceful, then that will be helpful. Himself . . . that will be helpful. . . . Lama Soeba . . .
self-immolated for the benefit of the other Tibetans who did this in a wrong way.”
Thubten’s suggestion that Lama Soeba makes the political immolation-suicide virtuous
by reminding us that in order to be virtuous, self-immolation must be about benefitting all
T R A N S L AT I O N S I I I : D E AT H I N L I F E U N D E R O C C U P AT I O N
The final translation that might still be explored is how this particular form of
political protest—self-willed death—is produced. What makes this choice the obvious
one as a political strategy? Here, we might turn to explorations of enumeration and
affect in relation to the lived experience of being Tibetan under conditions of political
occupation.
I have written elsewhere about how Tibetan struggles for political freedom get tangled
up in a more complicated set of conflicts over how to become modern via adoption of first
socialist and now market-driven reforms issued from Beijing.17 Although much of the
focus on Tibetan suffering has been on repression of religion, other government strate-
gies have also resulted in everyday ethical troubles that seep far beyond both the walls of
the monasteries and the texts of lineage teachings of Tibet’s great lamas. These everyday
forms of ethical struggle may help us to think about what kinds of evidence might or
might not work in human rights advocacy there.
Veena Das notes that ordinary ethics “trace the vulnerability of everyday life to the facts
of our being both embodied creatures and beings who have a life in language.” Ordinary
ethics are “made up of judgments we arrive at when we stand away from our ordinary
practices to that of thinking of the ethical as a dimension of everyday life in which we are
not aspiring to escape the ordinary but rather to descend into it as a way of becoming
moral subjects” (Das 2006, 1–2; emphasis added).18 Most Tibetans have cultivated
a strong sense of cultural identity in and around being ethical in Buddhist ways. This
is not to say that all Tibetans are Buddhist, or that all Buddhist Tibetans are particularly
skilled at living up to Buddhist ideals. Rather, ordinary ethics arise in the way Tibetans
think of themselves as being in the world, achieved through language, behavior, and
thoughts (or, in the Buddhist sense, through mind, speech, and body).19 Here is where
the history of perceived political occupation has created problems.
60 4 • VINCANNE ADAMS
Under programs of at first gradual and then later rapid modernization, Tibetans have
been asked to participate in health, education, and welfare programs that are ostensibly
designed to improve their standards of living, their social security, and their well-being.
Thus today many Tibetans find themselves hoping to become successful in modern
China by availing themselves of these opportunities. Families have embraced teaching
their children Mandarin over Tibetan, algebra over Buddhist ethics, socialist political
history over cosmology and astrology, and the list goes on. To some extent these regimes
of modernization have helped Tibetans to achieve the very goals they set out for them-
selves as modern Tibetans, but they entail more than a simple substitution of one kind
of knowledge for another, one set of political commitments for another. They entail new
ways of being and thinking about how to be ethical.
One way, then, that expectations for modernity arrive for Tibetans is through a calculus
of achievements scripted in the languages of enumeration. Official accounts of Tibet
generally begin with evidence that Tibetans are better off because of the things that can
be counted and measured. These include fiscal investments, population demographics—
quantitative indices of things that are supposed to indicate well-being. The result is found
in accounts like the following, which are pronounced by Chinese officials and some Tibet
scholars alike:
Infrastructure improvements have not only helped grow the economy but also have aided
in modernizing remote parts of the Tibetan plateau, an area with 3 million people about
twice the size of France. Paved roads allow herders easier access to hospitals and the capi-
tal, where they sell handicrafts; . . . cellphone service in parts of western Tibet is better than
in parts of New Jersey; . . . Material living standards among the 80 to 90 percent of the
population living in rural Tibet are rising rapidly. Health-insurance plans are getting better,
bank loans are now more accessible, schooling is free for primary school and middle school,
and access to electricity and water is improving. At the improved schools, students learn
Mandarin, which gives Tibetans access to work opportunities in government offices in
Tibet and in companies throughout China.20
To affirm these claims, the government is very good at providing long lists of statistics
that purport to show that Tibetans are better off than they were before “liberation”:
. Tibetan birth rate and natural growth rate has exceeded that of China since the
1970s (because they are exempted from the one child only policy);
. Death rate for pregnant women has decreased from 5 percent in 1959 to the current
0.399 percent;
. Infant mortality rate is down from 45 percent to 0.31 percent;
. The life expectancy of Tibetans reaches 67 years, almost double the figure in the
1950s;
. The average income of the urban population rose 24.5 percent last year to 11,131 yuan
(1,590 U.S. dollars);
In these accounts, one senses that what matters most about them to government offi-
cials is that they are factual; they can be presented as statistical truth, affirming by objec-
tive measures of enumeration the many ways that Tibetans are better off now than his-
torically. It is important for the government to be able to make this claim not just to
Tibetans but to the wider outside world. While some would take issue with these statistics
on grounds that they are simply not true (or that, for instance, it is impossible to actually
know in a statistically valid way what things like maternal mortality rates are in rural
areas),22 I want to focus instead on other ways to think about the problem of enumeration.
The use of this kind of evidence is part and parcel of the experience of modernization
under what many perceive as Chinese occupation. Knowing how to think about them-
selves as modern means, for Tibetans, thinking of their everyday lives in terms of these
enumerations, whether in relation to their income, their participation in productive
work-unit activities, the number of children they have in relation to national and regional
statistics, or even in the intimate terms of their menstrual regulation, when they can get
married, ask for promotions, educate their children, and so on. The penetration of state
efforts to enumerate the practices of everyday decision making are in a very real sense
organized around these specific socialist framings of what it means to be good citizens.
I have witnessed this in hospitals in Lhasa, as women talked about the pressure they
faced to have abortions in order to avoid going over their work-unit birth-rate quotas, and
in villages as farmers talked about their crop productivity in relation to regional harvest
norms that were expected of them at county tax offices. In this, Tibetans have much in
common with everyone else in China.
I don’t mean to suggest that Tibetans do not historically, or did not, have ways of
enumerating things, or that there is a uniformly ethical way of being Tibetan (i.e., not all
Tibetans care about being virtuous in the same ways). However, I would argue that in
terms of political debate over how well Tibetans are doing under Chinese rule, the tyran-
nical use of numbers and enumeration now takes on somewhat different and highly
charged meanings. In China’s Tibet, the use of this kind of enumeration is how the
government lays claim to being ethical in relation to Tibetans.
When assessments and decision making about the quality of life are enumerated in
statistical ways that attest to how well Tibetans are doing, Tibetans are left with no real
60 6 • VINCANNE ADAMS
way to counter them or to contest the evidence. Even efforts to produce counterstatistics
would, I suggest, miss the more important problem: how troubling modernization has
become as a set of ethical demands that challenge them in an everyday ordinary way. The
numbers used by the state often displace Tibetans’ own sensibilities about how to be
ethical—how to be moral persons—in modern China.
My point is that it is in part in the numbers that China’s failure to win over the hearts
and minds of Tibetans is seen. When Tibetans talk about being ethical, they refer to
things that spread far beyond explicit reference to dharma and religious precepts. The
way people say hello, the direction in which they walk around prayer stones, the kind of
food they eat and how they eat it in relation to who they eat with—all are ethical enact-
ments for them. Ethicality emerges in how they make decisions to have children based
on family alliances, romance, and accidents attributed to the force of karma. It is in how
they think of their crops in relation to protective deities who remain guardians of the
village because they are treated with respect. Most Tibetans know that things are not as
rosy as official numbers make them seem, but the evidence they would use to show this
is not constituted in numerical ways (or at least it has not been historically). It is in the
way they talk about the hardships of life, their fears of poor rebirth because of having
killed a fetus, their concerns that protective deities of their village have left for good
because of the mining and quarrying they have been forced to do on the mountains
where these deities reside.
These stories that reveal a kind of ethical violence are ignored by the state because, in
part, that kind of evidence exists in a world that has no purchase in numerical terms.
They are individual stories, anecdotal accounts, experiences based on perception rather
than facts. But, I would argue, it is in these unique and specific accounts that we see how
ethicality becomes a force of life and death.
A few more examples of everyday ethical violence might be useful:
I sat next to my friend Namgyal at a Chinese-hosted banquet to celebrate the signing of his
new business deal when his hosts ordered turtle soup. This happened often, he noted, and
when Tibetans are offered the soup, the hosts often wait to see who will eat it and who will
not. For Tibetans, my other Tibetan friend sitting on the other side of me explained, eating
turtle constitutes a kind of irreparable harm in that it prevents rebirth as a human. She
whispered this to me before I took my first bite. I sensed mounting anxiety at the table as
I realized that to refuse it in front of Chinese hosts would be to openly resist not just the
food but a version of government-imposed modernity that rejected as backward and super-
stitious fears about rebirth in relation to turtles. Namgyal sat for a long time watching the
others and perhaps deliberating whether or not to eat the soup as well. In the end, he ate
the soup, perhaps thinking a few rebirths might not be as important as the short term gains
promised by this business deal.
In 1998, during a brief period when restrictions on religious freedoms were being lifted
in Lhasa, my friend and colleague Tashi and I joined thousands of Tibetans who were
In 2003, Jampa, a young Tibetan entrepreneur, told me about the time he went with his
mother to perform tsetar, which is saving the lives of beings who are destined to be killed.
Every year they would buy a bucketful of live fish from the market and then drive to the
Kyichu River just outside of the city, where they released them. One time, while on their
mission, they delivered the fish into the water but as they drove away noticed a Chinese
fisherman just downstream who was catching them! Jampa pulled over and pleaded with
the fisherman to stop fishing there, explaining to him the merit making of having just
released them. But the fisherman refused, arguing that Jampa and his mother had already
gained the merit for releasing them and now he was entitled to catch them, as he was poor
and had no other source of income. Jampa got so mad at him he grabbed the fisherman’s
bucket of fish and threw them all back into the river.
60 8 • VINCANNE ADAMS
to Lhasa for begging during the holy month of Saga Dawa (when wealthy urbanites make
offerings to the pilgrims, thus allowing both to gain merit), but then publish statistics
stating that farmers’ per capita income increased by 14.5% and therefore they don’t need
to beg. Military crews regularly destroy prayer stones and shrines on pilgrim routes
throughout the city on grounds that they are disruptive to the flow of traffic. They have on
occasion then turned these prayer stones into flagstones for walking paths, forcing Tibet-
ans who are doing circumambulations to walk on and desecrate them with every step they
take. In the meantime, official reports focus on the fact that investment in urban infra-
structures like these have made Tibet’s cities not only cleaner and more efficient but also
economically sustainable. Infringements on traditions and traditional spaces are cali-
brated by Tibetans as a set of trade-offs between those things that can be counted as
measures of Tibetan happiness by the state and their experiences of losing what in some
sense defines them as ethically virtuous Tibetans.
Under conditions of perceived occupation, Tibetans struggle with many of the same
political and cultural tensions that have characterized oppressive political relations in
other places at other times.23 At the core of Tibetans’ experiences of oppression under
Chinese rule is the problem of how the two cultures have failed to understand one
another. Tenzing explained:
Tibetans learn very early that they must give up being Tibetan in order to succeed [in China’s
Tibet]. Like business transactions, . . . everything they do, they learn that they must give up
much to succeed. But not in a good way. It is in a bad way; they must give up being Tibetan.
The problem is that it is like a marriage, you know? It is a sixty-year marriage between
Tibetans and Chinese, and yet still they don’t know us. Sixty years, but they still don’t know
us. They think they do, but they don’t. They don’t really understand us. They say they sup-
port religion, but they don’t really. They just use Buddhism for getting rich. They show off
Tibetan culture as their “treasure” but they don’t really support Tibetan culture. Then, they
get angry when they see Tibetans protest. . . . These Chinese, they don’t really know what
is happening in Tibet.
Tenzing’s suspicion that the Chinese people he and his compatriots are forced to
embrace in their homeland just don’t really understand Tibetans or their sense of everyday
ethicality poses an interesting problem to Tibetans. For, if it were simply a matter of educat-
ing the Chinese about what Tibetans really want, I suspect that few Tibetans would resort
to such drastic measures to make their point. The problem, I would guess, is not that the
“Chinese” do not understand this kind of ethicality but that they do. In fact, I suspect that
given the harsh reaction the government has offered toward self-immolating Tibetans—
including incarcerating those suspected of or helping others who may be plotting to self-
immolate, and labeling self-immolators as terrorists—it is likely because officials do know
what this sort of ethicality is and why it means so much to the Tibetans. In fact, it is pre-
cisely because they cannot stop Tibetans from embracing this kind of ethicality in their
Ethical conflicts like the ones I’ve mapped out occur as affective experiences, as does the
inhabiting of bodies in ways that make ethical experience the basis for corporeal existence.
In everyday encounters in which Tibetans are made to feel not only frustration, but a
deep sense of cultural loss under conditions of occupation, I would argue that affect
produces a surplus of emotions and ethical demands that call urgently for action that
produces monstrous responses. Over the past decades, these responses have taken the
form of protests and, more recently, assaults on Chinese merchants who were burned
alive in Lhasa storefronts. Now they take the form of Tibetans setting themselves on fire
in acts of the ultimate defiance of perceived occupation but also ultimate acquiescence
to a new set of demands about how to be ethical.
Returning, then, to the problem of enumeration, I note that these regimes that are
used to make Tibetans feel they are being cared for by the state also produce a kind of
friction in relation not only to their everyday experience of life (and what it means to be
living in an ethical sense) but also to their resistance efforts. Regimes of enumeration in
Tibet are offered as a mode of being ethical, and yet such engagements often undermine
Tibetans’ abilities to be ethical in ways that make life possible. In this space of friction,
multiple strategies of political action are mobilized. Logics of internal moral worth are
brought up against state-mandated forms of expression of ethicality. If Tibetans feel they
must self-immolate in large numbers in order to be heard, from where do they get this
idea if not from the linguistic nexus that is already given to them as a strategy for being
ethical under Chinese governance? Stated another way: If it is in the numbers that China’s
failure to win over the hearts and minds of Tibetans can be seen, then will it be in the
numbers that Tibetans think they will, finally, be heard by them? Or, more critically, by
observers like those of us who use rubrics like human rights to help them? Are they
using numbers to counter the numbers, so to speak? Perhaps this, ultimately, may
be what Tenzing referred to when he told me that Tibetans got this idea from the
Chinese.
I am arguing here for a reading of everyday ethics that is embodied and experiential,
in which the options for effecting change emerge in this conflicted space of death in life,
and in which strategies for being “seen” by being numerous (literally by becoming epi-
demic in proportion) are mingled with modes of being ethical by way of bringing about
change through fire. Enumerative logics play a role in these performances of change
making, serving as a sort of fuel to the fire of self-immolation.
Tibetans now account for nearly a third of all politically motivated self-immolations
that have occurred worldwide since the 1960s. These numbers should make a difference.
Perhaps they will because the global stage is also one where counting, and high numbers,
matter. Rather than sit uncomfortably with the possibility that this is true, and that conse-
quently more and more Tibetans should join in in order to force change, I would offer a
different ethical proposition. I wonder if we should be speaking numerically about them
T H E O RY A S V I RT U E
Imagine the face of a twenty-two-year-old Tibetan monk engulfed in flames. His grimace
is torture, his hand waving wildly as his burgundy robes turn to bright orange. He is
running as if to escape the searing of his flesh. People stand behind him, screaming but
helpless; they cannot catch him in time to put out the flames.
The discomfort produced as a visceral response to the suffering of a being who has
decided to sacrifice his or her life by setting himself or herself on fire traffics in an affect
that, in its imposition of a kind of violence of its own, also has great potential. Unlike the
political martyr who kills others as well as himself for a cause, Tibetans are killing them-
selves for a political cause. In bearing witness to this violence, we may feel troubled, but
in some ways, however unequal in its outcomes and however wretched in its aesthetic,
in this witnessing we are also made to share the space of suffering inhabited by Tibetans.
Inviting people to share this space is, in obvious ways, risky. It is hard to imagine how to
read this act as one that is about virtue, about politics, or even about everyday ethical
conflicts, when it is so clearly also about violence—about inflicting a kind of trauma not
only on the victim but on those who have seen it. And this is, in part, my point. How can
we make use of this productivity of affect—this surfeit of feelings about what is happen-
ing? How can we talk about its virtue or its causes in ways that justify (or simply explain)
why it happens without simultaneously contributing to its escalation? Even more impor-
tant, how might this productivity enable us to use this affective surplus in order to bring
about change?
Since Durkheim, suicide has been the case in point for a theory of society, both
explaining its causes and defining a sociological method that would have some kind of
efficacy. Others have pushed in similar ways to see suicide in relation not to the anomie
of the individual but to the collective experience of structured oppressions. Supporters
of both positions have probed for ever more sophisticated ways of providing evidence of
suffering in order to reveal what is at stake for those whose lives are lost, but also to
perhaps intervene upon the conditions that give rise to the desire for suicide, if we can
call it that, in the case of Tibet.
I have picked up on these threads here, in particular using Das’s concern with the
relationship between pain and language, to understand how “ordinary ethical” experi-
ences contribute to suffering in Tibet and to posit that the enumerative linguistic regimes
of Chinese governance may be implicated in the way Tibetans are making sense of self-
immolations, escalating their number. My attempt in this exploration has been to move
N OT E S
Tibet on Fire is the name of a Web-based listserve media organization that posts information
about pro-Tibet activities and news (www.tibetonfire.org).
An earlier version of this chapter was presented at the conference Human Rights in Trans-
lation: Bodies of Evidence, sponsored by the International Institute and the Department of
Comparative Literature at the University of Michigan, October 26, 2012. I benefited from
comments by Michael Lempert and David Porter on that version of the chapter. And many
thanks to Carl Walesa for editing help.
1. Songpan, “China’s Restive Tibetan Regions/No Mercy: Self-Immolations Continue, As
Does the Communist Party’s Hardline Policies,” Economist, November 12, 2011, www
.economist.com/node/21538173.
2. Adding to the growing group of sophisticated and sensitive voices writing and speaking
about these acts is not an easy task, and not one that should be undertaken without a sense
of purpose or without respect for those who have already done so. An excellent collection was
put together by Carole McGranahan and Ralph Litzinger (2012). I suggest, in keeping with
these sensitive analyses, that there is more to our task than simply getting the politics of the
suicides correct, or noting that these suicides have galvanized political engagement for support
of Tibetan independence (Sperling 2012). My question, following that asked by McGranahan
(2012) in relation to pedagogy, is: How do we, as social scientists, make the suicide-immolation
meaningful in and through our analysis, but also impactful?
3. For an example of a visual experience of this, see Lucy Li, “Young monk died from self-
immolation in Tibet,” Free More News, July 18, 2012, fmnnow.com/2012/07/18/young-monk-
died-from-self-immolation-in-tibet/.
4. International Campaign for Tibet, www.savetibet.org/resource-center/maps-data-fact-
sheets/self-immolation-fact-sheet. See also Phayul.com for up-to-date news: for example, www
.phayul.com/news/article.aspx?article=China+arrests+two+monks+in+Golok%2C+expels+
REFERENCES
Adams, V. 1996. “Karaoke as Modern Lhasa, Tibet: A Western Encounter with Cultural Poli-
tics.” Cultural Anthropology 11 (4): 510–46.
———. 1998. “Suffering the Winds of Lhasa: Human Rights, Cultural Difference, and
Humanism in Tibet.” Medical Anthropology Quarterly 11 (2): 1–28.
———. 2005a. “Moral Orgasm and Productive Sex: Tantrism Faces Fertility Control in Lhasa,
Tibet, China.” In Sex and Development, edited by Vincanne Adams and Stacy L. Pigg,
207–40. Durham, NC: Duke University Press.
———. 2005b. “Saving Tibet? An Inquiry into Modernity, Lies, Truths, and Belief.” Medical
Anthropology 24 (1): 71–110.
62 0 • VINCANNE ADAMS
SECTION 5
Writing in 1972, Johannes Fabian lamented that investigators of death in modern society
had become mere spectators of the primitive, offering up “their deaths” as violent and
exotic counterpoints to “our” deaths, seen as peaceful and rational. The imperceptible
transformation of culture into folklore, he felt, was a way of eluding the question of the
universal significance of death. The chapters in this section show the distance anthropol-
ogy has traveled in redefining how experiences of death and dying might provide a key
to the transformation of institutions and experience in contemporary societies.
The two terms, death and dying, joined by a conjunction, are, however, not symmetri-
cal: they refer to different regions of experience and are joined to the idea of life in dif-
ferent ways. It is a commonplace of both psychoanalysis and philosophy that one cannot
claim experience of one’s own death, for the subject narrating this experience is implicitly
seen to have survived that death. Though one might, indeed, never have a genuine
embodied sense of one’s own extinction, the chapters in this section interrogate the very
privileging of individual experience and the positing of a self-sufficient subject in posses-
sion of her experience. Instead, foregrounding how death might be seen as relational
allows us to think of both—how death is present within life, and how dying is not simply
something that happens to individuals but calls forth a response from all those affected
by this process as much as it does from the dying person.
In the opening chapter of this section on what we already know about death, Michael
Lambek (chapter 35) argues that all societies have a tacit knowledge of death, expressed and
even dramatized in myths, rituals, and other forms of cultural performances. These collec-
tive products of societal creation show the intimacy between life and death, each becoming
the condition of the other. Substituting the ideas of animation, de-animation, and reanima-
tion for those of living and dying, Lambek refocuses our vision and asks, What is it that
dies in the event of death and what is it that lives? Lambek’s questions—Do death and life
come in parts or in whole? What criteria might we use for deciding what lives and what
dies? Is it an organ, the organism as a whole, the life-form, or the whole biosphere that lives
and dies?—are not esoteric, rhetorical, or metaphysical questions addressed to the expert.
These are questions that societies ask of themselves, and we can track their unfolding in
rituals of sacrifice, of shamanism, and in the myths of beginnings and endings.
There are two different and even opposed contexts in which the problematic of death
and dying is engaged in the chapters of this section. In one case, as in Robert Desjarlais’s
chapter (chapter 36), set among the Yolmo Buddhists in Nepal, the scene is that of an
ordinary or normal death. We might see Harry M. Marks’s extraordinary record of medi-
calized dying (chapter 38) along with Roma Chatterji’s account of how she learned to relate
to a dying woman (chapter 39) as being about death’s potential to unsettle the ordinary
rhythms and taken-for-granted trust in our ways of being by its very normality. In another
REFERENCE
Fabian, Johannes. 1972. “How Others Die: Reflections on the Anthropology of Death.” Social
Research 39 (3): 543–67.
Michael Lambek
“Philosophy,” says Stanley Cavell (2010, 204), “does not seek to tell us anything new but
rather to understand what human beings cannot on the whole simply not already know.”1
Whether or in what sense death is something that we human beings cannot not already
know is itself an interesting question. Most people do know something about death from
the personal experience of losing friends and family or witnessing death in road accidents,
wars, or hospitals, and possibly also from personal intuition. Some cognitive anthro-
pologists have lucidly argued that knowledge of death, learned also through the observa-
tion of the killing of animals for food or pleasure, is something that human beings cannot
not already know (Astuti 2007, 2011). Another kind of knowledge about death, less
experience-near, is what has been collected in the ethnographic record as mortuary prac-
tices, professions of an afterlife, mythological mediations, and so on.2 Anthropologists
have rarely put these two kinds of knowledge together (but see Astuti and Bloch 2014) or
moved from a knowing about death to an understanding of death. Indeed, producing
knowledge about death may be one of the ways we deny or compensate for our inability
to fully accept or understand it.
About death there cannot be much new to say. And yet what there is to say is something
that every generation must know and say for itself. In fact, the very possibility of genera-
tion (of a new generation) is intimately connected to the death of prior generations. Every
629
human being faces death, living in the knowledge (and usually the experience) of the
death of others and the impending death of the self. Death is a certainty of life, ostensibly
the opposite of life but also its very condition. Death is irreversible and incontrovertible.
It is the fate of all living things3 and is the other to being.4 But death itself is also quite
literally unimaginable; being dead is an oxymoron. Human beings have various ways to
soften, repress, deny, or transcend this concurrent knowledge and absence of knowledge.
It is arguable whether or in what sense public and collective means (mortuary rituals,
etc.) increase or decrease knowledge, but they shape understanding, and they themselves
become the objects of knowledge and subjects of understanding for anthropologists,
philosophers, and laypersons alike. It is the ideas and practices concerning death that as
anthropologists we come to know, not death itself.5 Since these practices are variable,
ethnography, in contrast to philosophy, also contains much that, on the surface, we could
not have already known; that is part of the point of it.
Many people have argued that humans are driven by the anxiety of death, that mortal-
ity is the salient feature of our thrownness in the world, or that religions exist primarily
to assuage our fear of death, or to rectify in their pictures and promises of the afterlife
the injustices and uncertainties of this life. Religion may at times and places and for
some persons do these things. But if the cumulative anthropological knowledge on the
subject tells us anything, it is that mortuary practices and conceptualizations of life and
death are surely larger than any given function we can attribute to them.6
An alternative to functionalism has been to understand cultural texts and practices as
forms of mediation. Lévi-Strauss (1961) proposed that human beings are, by nature, by
culture, mediators. What we attempt to mediate, he claimed, are binary oppositions. He
did not say that the only opposition that thought mediates is that of life and death, and
he certainly leaves open the possibility that in any given instance life and death could
serve as mediating terms for some deeper opposition. Yet what if life and death are
understood to stand in a relation that is not binary, or not only binary—for example,
as interconnected or as incommensurable to one another—such that they cannot be
compared or contrasted along a single measure? What if the binary perception is not
primary?7
No terms are more common than life and death, no opposition more obvious than that
between them. Yet we do not know with certainty what happens at death or what it is to
die. Even medical scientists now argue over the criteria and boundary of life and death
(Lock 2002), possibly approaching issues that religious thinkers have long recognized.
Perhaps the terms are too simple, too static, too exclusive, turned on and off as though
by a switch (as technology now makes possible), and too dependent on thinking in terms
of the individual organism. Today, in some locations, it is possible to receive transplanted
organs, whether from living or ostensibly dead bodies. But in that case the body part itself
is not dead, leading to puzzles both ethical and conceptual;8 whose heart (or eye, etc.) is
this; whose “life” is it; do death and life come in parts or in whole; are they criteria of the
organ, the organism, the life-form, or the whole biosphere?
63 0 • MICHAEL LAMBEK
We could speak instead of the animate and inanimate, of animation, in-animation,
and reanimation. Carsten (2014) speaks lucidly of the suspended animation of life in the
body on the operating table or in packets of donated blood. Does animation circulate, or
is it better understood as reproduced? Is it continuous or discontinuous, personal or
impersonal, mortal or immortal? Is this what we talk about when we talk about the soul?
Bodies die and decay; bones and ashes lie silent. What happens to the life that inhabits
them? Is it “life” itself that dies, or only particular, animate bodies? A philosopher might
retort that, phrased this way, the question is nonsense: it is a category error to distinguish
the life from the body.9 But the anthropologist will counter that this is a distinction that
the majority of human societies (cultural traditions) do in fact make. The fact that a cat-
egory error can be so widespread and popular itself calls for philosophical understanding.
Distinguished from the individual body, perhaps “released” from it, what happens to
life? Where does it go? Where and how is it stored or kept from dissipating? Does it
circulate to other bodies, continuously or discontinuously, fully or partially, “naturally”
and mechanically or as the result of deliberate human action (“performatively”), person-
ally or impersonally, directly or as a distorted copy? In moving, how distinctive is it in the
new bodies compared to the bodies it once inhabited? Does it transmit features of former
living persons? What is the nature of the connection between old and new bodies or
persons who share the same life force or substance? (Is soul substance equivalent to the
genetic code?) Does the transmission of life substance take place only before death (as in
conception) or also after death (as in ancestral blessing)? What is the connection between
the generations, between the living and the dead? Is there an analogy, or even a direct
connection—a further part of the cycle—between what is transmitted from parents to
offspring in acts of conception, carrying the fetus, giving birth, or nourishing the child,
and what is transmitted from the dead to the living or the living to the dead? Are relations
of the dead to the living ones of “kinship”?
We hear much from some quarters about animism, and much from other quarters
about animation, in the sense of virtual reality, but what about animation in a more literal
sense? How are material beings animated, can animation be transferred, how is it con-
ceptualized, and can such conceptualization avoid, transcend, or repeal death (de-anima-
tion)? How different is animation, in its abstract, general, material, or physical sense,
from personalization, from the individual uniqueness or social specificity of the named
beings animated?
The literature and ethnography of sacrifice speak to the question of animation and de-
animation. For if life is released at death to be channeled elsewhere, perhaps this happens
63 2 • MICHAEL LAMBEK
direct and material one of rechanneling life, of revitalizing a moribund world, a weary
community, a sickly person, with the very stuff of life, captured in one body and trans-
ported to another. This is what James Frazer imputes to the sacrifice of the divine king
and what Edmund Leach attributes to the Christ story. In parts of Africa the vehicle is
chyme, extracted from one body (say, an ox) and spat onto another (usually a human). As
Ruel aptly puts it, the significance lies not in the life of the ox, but the life in it. The Afri-
cans that Ruel describes are naturalists—supreme naturalists, not supernaturalists.
(How could we have got it so wrong?) Life is taken from one being or state to apply it to
another. There is only circulating life, no afterlife.11
In this second kind of sacrifice, where the aim is the capture and rechanneling of the
life force, as in blood transfusion or transplant surgery, the death of the original vehicle
is merely an unfortunate condition or accidental side effect. Whereas in the first kind of
sacrifice, killing is precisely the point—the means, force, or principle itself—here sacri-
fice means the relinquishment, giving up, destruction, spilling, or wastage of something
precious or dear. It is parting with, as Sakalava in northwestern Madagascar say, raha tsy
foinao, precisely what you cannot part with. And Sakalava add (as many people do) that
it must be given freely and willingly. A cow offered in sacrifice that moos in complaint
when it is thrown is immediately released; such a beast is an embarrassing index that the
gift is insincere or ambivalent. In the second kind of sacrifice, the death is merely an
awkward necessity; if the effects could be produced without bloodshed, so much the bet-
ter. (And as Ruel points out, very often the death is produced without bloodshed—e.g.,
by means of suffocation. In life, breath circulates freely beyond the body, and between
bodies; in death it is stopped or contained. Blood circulates within the body; in death it
is spilled.)
Blood and breath, sacrificial and nonsacrificial ritual killing: one kind of sacrifice as a
personal, intentional gift, the first move in a sequence of hoped-for reciprocity (albeit one
where insofar as the original gift is destroyed it cannot be directly returned) or the giving
of thanks or obeisance; and another kind of sacrifice as an objective, material redirection
of life force. But perhaps not so different after all and perhaps often combined in a single
practice. Perhaps these are merely local shifts of emphasis or interpretation of one and
the same thing, relatively personalized and depersonalized circulations of life, based on
the same premise—namely, that death is necessary to renew life. Are not Christian, Mus-
lim, and Hindu offerings also about the channeling and renewal of life? Is that not what
the Lenten fast, a form of relatively depersonalized sacrifice, and the Easter feast, its cul-
minating inversion, tell us (Boylston 2014)? What hunters acknowledge in making offer-
ings to their prey? What head-hunting is about? Are not all positive forms (I omit witch-
craft, though it has its place here) of ritual killing about recirculating life? As Maurice
Bloch puts it (1992), are they not about the rebounding of vitality? And do not otherwise
instrumentally and materially conceived forms of circulating life also enjoy the passion
and drama of the killing, heightening the energy or the expectation of the aftermath?
Are these practices not also telling us we cannot take life lightly, that at the root of all
human value is life itself (Lambek 2008)? If sacrifice expends value, enjoys its willful
dissipation or destruction, does it not also posit (even or especially in human sacrifice)
that human life itself is the ultimate value; it is only on behalf of life (of one kind) that it
is worth expending life (of the same or another kind).12 If sacrifice is about the making
or circulation of life, using de-animation as a means to reanimation, it asserts that there
is no higher value than life itself. It is life (or life well lived) against which other things
may be valued, against which their value is relative.
And does not sacrifice mark a definitive break with what has come before, in order to
build a new future? The killing of the old, as Dinka of southern Sudan saw, is necessary
for the birth of the new. Does it not bind all the participants in a common commitment
(sometimes sealed with a communal feast) to what has newly been brought into being?
And is not what has transpired, what has been brought into being, a putting of the world,
or of one’s relations in and to the world, under a new or renewed definition, making, or
rather taking, or even staking, a new beginning? And is not that new definition, achieved
through death, not one of established intention, direction, purpose, well-being, fertility,
vitality—in short, of life? Life in its ethical no less than its biological sense.13
But if these performative intentions and effects shape the ethical force and message of
sacrifice, and assist our understanding of sacrifice as an ethical practice, let us not forget
Ruel’s point that there is also a directly material, organic process and understanding.
Are these practices then not also all saying that without spirit there is no living matter?
(Spirit, as Ruel puts it, and as many religious traditions do, is breath, is life.) Equally,
perhaps, that without acknowledging matter (and how better to acknowledge it than to
solemnly destroy it) there is no spirit? Perhaps they operate in a realm in which the mate-
rial and spiritual are not as sharply distinguished as in some theologies or social science
(cf. Houtman and Meyer 2012).
We think of life and death in binary opposition to one another, absolute states and
mutually exclusive. But everywhere they are not. The culmination of life is surely death,
and the only way to make sense of death is surely life. They are two sides of a coin, and in
fact literal coins are frequently what are placed in the mouths of the deceased, ready to
help them make the passage, either from this life to an afterlife, or from death back to life.
Without life there could be no death. Without death there could be no life. Death and
life are the mutual conditions for one another. We don’t need fancy intellectuals or exotic
rituals to tell us these things; they are things that every society has known, things that,
as Cavell has put it, “we cannot not already know.” But perhaps this is also knowledge
that every society has understood, elaborated, and interpreted differently.
63 4 • MICHAEL LAMBEK
6
And so to northwestern Madagascar. Madagascar suffers from poverty, poverty that has
grown over the years rather than receded. Many people do not get enough to eat; many
suffer from malaria and infectious diseases; many suffer from conditions for which
satisfactory health care is not available. And so, too many people die too young—in
infancy, childhood, or young adulthood. At the same time, many live to a ripe old age,
being still largely relatively free from the twin conditions of modernity that my friends
in Mayotte, who have a larger but nutritionally less-balanced diet, call the disease of salt
(hypertension) and the disease of sugar (diabetes). People in northwestern Madagascar
are also unlikely to die from drug overdose or gunshot, from domestic violence or military
violence or from leftover land mines.14 The frequency of death does not undermine its
pain or poignancy for the living. But nor do the brute facts explain how people in Mada-
gascar, widely reputed for elaborate burial practices, understand death.15
In their beautiful book on southern Sakalava funeral art, Sophie Goedefroit and
Jacques Lombard (2007, 79) make the following startling remark: “The living and the
dead of the same lineage are contemporaries.”16
Goedefroit and Lombard depict a world that is in many respects very different from
the one inhabited by the northern Sakalava in Mahajanga whom I encountered. The
people they describe are much further removed from the orbit of Islam, and they were
visited by the ethnographers in the 1980s and earlier. The life in death that the authors
describe, the burial practices and tombs, and most notably the erotic funerary sculptures
that speak so directly to the connections of sex and vitality to death, are not things I have
seen. I am attuned only to distant echoes. But the remark about the living and the dead
as contemporaries is apposite.
Malagasy people address these matters with a story in which humans were offered the
choice between two models of life and death—whether to die like the banana tree or the
moon.17 In the image of the banana tree, the old are cut down so that new shoots can
rise: without death there would be nothing new in the world, no variety, no life. By con-
trast, the moon provides an image of life without full death but without reproduction
either, a continuous and sterile cycling between half-death and half-life, a selfsame sin-
gularity. In the story, humans choose the banana tree. But in fact this story also provides
a commoner’s perspective on Sakalava royalty. What distinguishes Sakalava ampanjaka,
members of the royal clan, is that they appear to have chosen the moon (although I don’t
know any myth that explicitly states the case). They live on in half-life after death (or half-
death after life) by rising intermittently as spirits (tromba) in the living, and conversely,
they limit the number of their offspring, contestants for their power (Feeley-Harnik
1991). Ritual work is centered on reproducing ancestors, not descendants.
The core myth of northern Sakalava, which establishes the foundation of their dynasty,
tells of a queen who chose both options, dying (like the banana plant) so that her son
could rule, but as a condition of her dying, ruling out all competitors (Lambek 2002) and
63 6 • MICHAEL LAMBEK
the rise, not the wane. Spirit mediums bathe in the ocean each month at the new moon,
and royal ancestral work happens when the moon is full. The force of the ocean (rano
masing; literally, “sacred/potent water”) is evident in the tides, as pulled by the moon.
Public events for spirits happen only at night, and the more senior the spirits, the later
in the night their appearance.
When spirit mediums immerse themselves in the ocean at the beginning of each new
month, they often toss a small coin into the waves. They also keep a large silver coin at
home on their altar table, generally in a white dish, with water and white clay. The water
in which the silver rests is used to bless and purify people. The coin is linked to the per-
son of the spirit, purchased when the medium first becomes actively possessed by that
spirit. A medium with many spirits tries to have a coin for each of them. Indeed, the
person of whom the spirit is the animated half-life lies in a grave that contains a similar
silver coin, resting either in the mouth, where it was placed before burial, between the
jaws, or in a white plate adjacent to the head. All members of the royal clan are buried
with such a silver coin, probably even those whose burial practices otherwise accord with
Islam or Christianity. And when the spirit rises for the first time in a new medium, the
lips are wiped with such a coin (or with a silver bracelet), or the coin is spat out from the
mouth (as though the corpse were rising from the grave), so that the spirit can speak, or
can speak clearly and truthfully.
Royalty are closely associated with precious metal; their clans are known as the
Descendants of Gold and the Descendants of Silver. The coins were once currency, with-
drawn from the market as material signs of royal power and duration. Likening money
explicitly to speech, the words for speech and for money or precious metal are homo-
nyms, vola. Like pure or real silver, the words of the spirit should be real, solid, and truth-
ful, not counterfeit. They should have incommensurable value. The word for month and
moon, fanjava, was formerly also used for money, and at times moon and month are
called by the older terms vola and volaña. Like the moon at its height, coins made of silver
are round and shiny. Like the moon they appear and disappear. Like the moon they cycle,
but ultimately remain permanent, singular, and unexchangeable, the standard of value.
In sum, there is a thick chain of association between the moon and the months on one
hand and coins, precious metal, royalty, immutability, perdurance, speech, truth, and
ultimate value on the other.19
It is not just any coin that is placed in the mouth of the royal corpse or emerges from
the mouth of the spirit medium, not just any coin that rests in the dish in the tomb or
the dish on the medium’s altar. The coin must be made with a significant portion of sil-
ver, and it must be of a kind known as tsangan’olo. It has long been a practice for Malagasy
to refer to coins by name rather than by denomination. This made eminent economic
sense during the long mercantile period in which coins of many currencies circulated—
Dutch, Portuguese, British, American, French, and Indian, among others—whose rela-
tive values presumably fluctuated. Better to consider the size and material of the coin
than the number engraved on its face, better to name it for a feature of the image
63 8 • MICHAEL LAMBEK
they are, in fact, dead. While living with and sometimes as the reanimated monarch, the
medium must avoid everything that had to do with the monarch’s original de-animation.
Because Sakalava frequently attribute death to poisoning, so the medium must avoid all
foods the monarch ate on the last day of life, foods whose ingestion may have contributed
to the death. The medium has to pay special attention on the day of the week on which
the monarch died, a day on which not only can the spirit not rise in the medium but the
medium must not be reminded of the monarch’s story on pain of illness. I have fre-
quently made the mistake of trying to talk to a medium about his or her spirit on days
when the medium cannot talk. In the case of a very powerful and dangerous spirit, it may
never be possible for the medium to speak directly about the monarch’s demise.
The division of the deceased monarch into inanimate but hard and enduring bodily
remains and animate mobile spirit—half-death and half-life, respectively—is replicated
in the division of labor between the tomb guardian and the spirit medium. Each former
monarch is assigned a guardian who lives at the settlement adjacent to the cemetery and
oversees a house there constructed by the mediums of that spirit and home for them
when they visit the cemetery. A given ancestor can appear in many mediums but will have
only one guardian, permanently assigned to his or her tomb. The guardian, who comes
from a class of former slaves or a specialized kind of “ancestor person,” can deal with the
polluting elements of death without harm.22 It is only the guardians who can enter the
tombs to rewrap the bones in new shrouds purchased through the energies of the medi-
ums. Upon the death of any medium of the particular ancestor he tends, the guardian
(who is always male) receives the tsangan’olo coin, clothing, and other paraphernalia of the
spirit, rendered impure by these objects’ association with the death of the medium. In the
guardian’s hands these are desanctified; guardians can wear the old clothing of royalty,
and they—but only they—can resell the coins on the market (to a jeweler, who is usually
of South Asian background and hence at arm’s length from the system), where they can
be purchased and resanctified by a new medium.23 In this way, guardians are compen-
sated for their work by the half-living ancestors. Coins thus circulate among mediums as
spirits do, returning to their grave sites before reemerging. Both spirit mediums and tomb
guardians have intimate relationships with the ancestors, but the intimacy is of a different
kind and has different consequences in the two cases. When the spirits rise in their medi-
ums, they can issue commands to their servants. To add to the complexity and intimacy,
guardians are often married to mediums (who are frequently female) of one and the same
royal ancestor.
The spirits are neither fully living nor fully dead but move back and forth between
death and life, or rather, half-life. They rise from their shrouds and tombs, dress, greet
people, smoke, drink or eat, listen and speak—and then take their leave, some of them
going directly under their shrouds, and return to their tombs. Often they emerge into
presence showing the symptoms of their death, most dramatically in a prince (Ndranave-
rona) who choked to death, most poignantly and very powerfully in the queen (Ankanjo-
vola, “blouse of silver”) who appears in the throes of childbirth that caused her demise.
I now turn briefly to a different half-life, a half-world away, where the permeability rather
than strict opposition of life and death is also found.
In Switzerland if you visit the cemetery of a small village you are likely to find that the
graves are not very old, dating back perhaps thirty years or maybe fifty, but no more. They
are laid out close together, in neat rows, with engraved tombstones. Within the cemetery
all the graves are likely to be well cared for, all with the same pattern, or perhaps one of
several patterns, of planted flowers. The graves are tended by the municipal gardener,
their upkeep paid for by taxes and perhaps additional fees provided by the families of the
deceased. The cemetery is pretty in the Swiss way of things, neither baroque and ornate
nor gloomy and magisterial. There is harmony of color and scale with the flower boxes
hanging from the homes of the living. The flowers are symbols of life, perhaps also of
ephemerality, temporality, and the cycling of all things, and, like Sakalava spirits, they
are also fresh and colorful, intense with life. They demonstrate care for the dead and
provide death and perhaps the dead with beauty, scent, and the very quality of blooming.
However, this treatment of the dead in Switzerland is not permanent. There are no older
graves or tombstones because every generation or so, when the coffins and bodies have
been absorbed by the earth, the tombstones are returned to the families and the plots
turned over to receive new bodies. It makes sense in a long-inhabited country with a
shortage of surface space; if something were not done, the dead would surely crowd out
the living.24
But if bodies do not have long lives, so to speak, if they return fully to earth within a
generation or are matter-of-factly turned back into the earth, the same is not necessarily
true of other parts of the person: the Geist (spirit) and the Seele (soul). Many Swiss would
leave matters of the Seele to the church and to God and would refer to the Geist with
respect to the secular life of the mind. Others would see things somewhat differently.
Notably, a number of Swiss, though I do not know what proportion or how many, entertain
64 0 • MICHAEL LAMBEK
the possibility of reincarnation. Many societies around the globe, from the Inuit to the
Tibetans, entertain similar and often more elaborate, if not always historically related,
propositions (Obeyesekere 2002).
I mentioned earlier that Lévi-Strauss’s binary oppositions could be supplemented by
recognition of incommensurability. Thus in Europe the binary opposition between mind
and body—if indeed it is a simple dualism and not an incommensurable difference of
its own—sits alongside a tripartite division of mind, body, and soul (Geist, Körper, Seele).25
These two models, the binary and the tripartite, are incommensurable with one another.
So, too, are the Christian model of an afterlife and the non- but not anti-Christian model
of reincarnation. If asked, many Europeans could probably not clarify the distinction
between what transmigrates and what is subject to heavenly reception.
Reincarnation is not the same as spirit possession, but there is an affinity. In Sakalava
possession the predecessor remains half-alive in perpetuity, periodically entering into
relationship with individual spirit mediums, who are each distinct human beings. The
difference between spirit and spirit medium is important. In Swiss reincarnation the
predecessor goes through a succession of lives and deaths as an ordinary human being.
There is a quality of sameness, not difference, asserted between the person being rein-
carnated and the person who now identifies as the reincarnated predecessor. They are
simultaneously individuated and merged. But both the Sakalava possessing spirit and
the European reincarnated spirit are beings who do live beyond or outside death—and
yet not in some entirely different transcendent world, nor in some unique state of hellfire
or salvation, or even limbo, but, at least partly, here in this world, in the bodies of the
living.
Both spirit possession and reincarnation can be understood as forms of dividuality
(Strathern 1988) or mimetic personhood (Lambek 2013), but a major difference is that
in Malagasy spirit possession the dividuality is played out in public ways and through
multiple social relationships: each medium has relationships with other mediums pos-
sessed by the same or closely related spirits, and with guardians, shrine officials, living
royalty, and clients; likewise each spirit with historically related spirits, guardians and
mediums, clients, and living descendants. In reincarnation the past and present person
are condensed, and in Switzerland (as opposed to manifestations among Inuit or Tibet-
ans) the relationship is quite private. The dead person infuses and subsists in the sub-
jectivity of the living person and perhaps through the latter’s narrative accounts, but not
in fully realized social relationships or other objectifications. Specific instances of rein-
carnation are not publicly authorized and indeed would then likely be rejected by Chris-
tianity or science.
As it developed in Europe, science became the study of the material world. The origins
and development of science entailed thereby a divorce of matter from spirit. The spirit was
left to religion, philosophy, and then the rest of the humanities, or was successively rema-
terialized as mind, memory, and brain. But at their historical roots matter and spirit were
not understood as opposed or incommensurable, and another tradition survived alongside
AFTER LIFE • 6 41
science, developing in parallel but also always in relation and response to it. Today in
North America this is referred to as New Age, but the Swiss practitioners I spoke with
strongly rejected this epithet, pointing to the antiquity of their traditions. In Switzerland
(and elsewhere in Europe) the tradition has been refracted in what became a number of
distinct disciplines (that then influenced each other), including homeopathy, anthroposo-
phy, and Jungian analysis. Outside these institutional structures, ideas and practices flow
and percolate and need not belong specifically to one tradition. Indeed they draw on ele-
ments of Mediterranean esotericism, ostensibly from ancient Egypt, from pre-Christian
European traditions, and from Asian ideas brought to Europe in movements like theoso-
phy and, more recently, TCM (“traditional Chinese medicine”). There are also ideas of
electromagnetism and of healing by means of secretly transmitted Christian prayers.
Many Swiss draw on a selection of such ideas and practices as well as on scientific medi-
cine (Schulmedizin) and Christianity, in a kind of heteropraxy not so different from the
way people in Mayotte drew upon a practical balance of Islam, cosmology, and spirit pos-
session (Lambek 1993). The lesson perhaps is that no one single system seems adequate
to fully (consistently and completely) address existential questions and practical dilem-
mas, such as illness and death.26 Today one can find in Switzerland both medical practi-
tioners and pharmacies that specialize in only one tradition and others that explicitly
combine more than one.
One of the oldest traditions is alchemy, associated with Paracelsus, a monk who was
born in Switzerland in 1493 and resided in Switzerland at certain times during his peripa-
tetic life. He was enormously influential for a time, before chemistry and pharmacy became
distinct sciences (the latter, in particular, becoming a dominant industry in Switzerland),
and has regained popularity in certain circles today. At the basis of alchemy (Spagyric) as
propounded in the name of Paracelsus today is the transposition of matter from one kind
to another via the distillation to its essence or spirit. Paracelsus used this approach in
medical treatment and perhaps (ostensibly) to produce gold, but no doubt, as a Christian
monk, he did not apply it to dead bodies. However, there is evidently an elective affinity, if
not more, between the ideas of alchemy and reincarnation. In alchemy, matter does not
disappear permanently; it is only transformed. Distilled to its spiritual essence through
death, the soul can then remanifest in new and different bodies. Such a model was rein-
forced in the past century through the influence of Indian philosophy and mysticism, most
evident in the development of anthroposophy, which acknowledges reincarnation.27
Of course, I am not saying that these ideas are characteristic of all Swiss or even the
majority. While they could be read as an alternative to Christianity (for some practition-
ers that difference is critical, while for others there is synthesis),28 the ideas and practices
are more salient in their relation to science or medicine as a kind of para-science or
alternative medicine. Refusing to defer to the authority or hegemony of established sci-
ence and medicine, albeit mimetically drawing upon them, these practices offer a kind
of popular science and medicine. But the difference is quite radical if one considers them
an alternative to materialism. It is in this respect that they relate to reincarnation.
64 2 • MICHAEL LAMBEK
8
So the questions are: What ceases to be? What is irretrievably gone, absent, missing, no
more? And what is it that remains? Or what is it that is transformed by the (natural) fact
of death and what is it that is retrieved or reanimated by the (cultural) acts of living peo-
ple in the face of death? What are the units that live and die, or through which life moves?
What passes between the generations as our parents and predecessors animate us and
as we shall animate our successors (or vice versa)?29 Or can and do we in fact perceive
and comprehend radical disappearance, sharp separation, pure absence, nothingness?
As anthropologists look around, with the particular kind of gaze we have, we see eve-
rywhere signs of afterlives and practices of transformation. In China, the statues of gods
are animated upon their installation in temples and Mao remains undecayed in body in
Tiananmen Square, iconized on the “head” side of all circulating paper money, and resid-
ing deeply and ambivalently in memory among his contemporaries and their offspring.30
If one mediation is to think of humans resurrected in some kind of paradise or other
transcendent space (hell, a distant island) or waiting in limbo to be assigned a new loca-
tion, another is to see the dead or some part of the dead, the part that is not precisely dead
or that precisely is not dead, as still here among us.
Thinking of and with the Malagasy material, I call this kind of afterlife a sublunary one.
The sublunary is a half-life, visible by reflection, like the moon, but it is also here on earth,
under the moon, and bearing some kind of materiality. Sublunary creatures are multiple and
often incommensurable with one another, not strictly definable by means of binary criteria,
assignable within taxa, or distributable along clear intersecting semantic axes; they could
include ghosts and ancestors, individual persons and collective abstractions, material relics
or portraits, biographies, and reputations. Photographs, in fact, are reflected emanations of
light in much the way I have described the moon.31 Sublunary creatures could include Mala-
gasy royal ancestors who possess the living and historical figures who reincarnate as contem-
porary citizens of Switzerland. They invite us to think about the historical ontology (Hacking
2002) of bodies and souls, and matter and spirit, and perhaps to rethink opposed states of
life and death as connected processes of animation, de-animation, and reanimation.
POSTSCRIPT
At presentations of this talk I have been unsatisfied by my inability to address the responses
it has elicited.32 To return to the introduction, death is at once all too well known and com-
pletely unknown. While it inserts itself continually as one half of a binary opposition—
death and life, before death and after death, and so on—it is equally imagined in other
ways: as part of a circulation or flow of what could be called soul, life force, spirit, energy,
or animation. There is no conclusive knowledge about death to report, certainly no conclu-
sive knowledge that is satisfying or welcome. So in reading this, you have used an hour of
your time in order for me to tell you what you cannot not already have known.
AFTER LIFE • 6 43
N OT E S
Research has been generously supported by the Canada Research Chair at the University of
Toronto Scarborough and the Social Sciences and Humanities Research Council of Canada.
Thanks to Veena Das, Nicholas Evans, Elisabeth Hsu, Shao Jing, Jonathan Mair, Piers Vitebsky,
Robert Weller, Der-Ruey Yang, and other colleagues and students at the Anthropology Institute,
Nanjing University; at King’s College, Cambridge; the Institute for Social and Cultural Anthro-
pology, Oxford; the Graduate Student Conference at the Department of Religion, Columbia
University; and the Centre of Ethnography, University of Toronto Scarborough, for penetrating
responses. I offered this paper at Cambridge in memory of Malcolm Ruel and in New York in
memory of Helen Tartar.
1. The thought continues: “Yet we are shown repeatedly in the [Wittgenstein’s Philosophi-
cal] Investigations that one cannot tell another something unless it is news to that other. It
follows that philosophy takes place before or after we tell things to each other, in art or in
rumor or in confidence or as information. So what moves philosophy to speak?” The title of
Cavell’s great memoir appears to approach knowing from a slightly different angle.
2. The literature on mortuary practices, ghosts, and ancestors is enormous, indexing how
important each of these things have been, not only for anthropologists but in human ways of life.
3. It has been suggested that one-celled organisms may be in effect immortal.
4. “To be or not to be.” On the centrality of the verb to be in Hamlet, see the very interest-
ing discussion by Freddie Rokem (2010).
5. This is not to deny that we have the experience of the death of others, sometimes right
in front of us.
6. Moreover, I cannot see a reason to single out death from all the other anxieties that best
us.
7. To be clear, I am not asserting that it is not primary. I am constructing an ethnographic
thought experiment. However, compare Descola 2013.
8. The ethical issues concern the fact that reanimation of one organism may entail de-
animation of another.
9. In some circles this category error is known as vitalism.
10. The latter is addressed by a vast literature since Frazer (1922). For a good overview, see
Feeley-Harnik 1985, and for a more recent careful historical-ethnographic analysis of an indi-
vidual case, see Vaughan 2008.
11. Or rather, the afterlife—and death—are beside the point.
12. This implies hierarchy of value, and of lives.
13. I develop these points with respect to enactments in general in Lambek 2010.
14. These remarks are all based on informal observation, not statistics, though some points,
like the prevalence of malaria and the absence of land mines, are unquestionable.
15. For powerful accounts of burial practices, see especially Bloch 1971, Feeley-Harnik 1991,
Huntington and Metcalf 1991, and Middleton 1999.
16. “Les vivants et les morts d’un même lignage sont des contemporains.”
17. I have not heard the story recounted myself, but Sarah Gould did, and it was recorded
by Dandouau (1922). Eva Keller (2008) has also found it on the northeast coast. I am indebted
to Sarah Gould for drawing my attention to the story in an unpublished paper.
64 4 • MICHAEL LAMBEK
18. For an extended discussion of these points, as well as those in the next paragraph, see
Lambek 2002.
19. The coins can be likened to what Rappaport (1999) calls ultimate sacred postulates
and which he sees as the core of religious systems.
20. One could make connections to circumcision and of course the phallus, though the
latter is not an explicit association.
21. Many of the points in this section have been extensively developed in Lambek 2001.
22. It is another kind of “ancestor person” who deals with the pollution of preparing royal
corpses for burial and who, in the past, could serve as a sacrifice.
23. In 2012 I saw tsangan’olo dating from 1850 for sale from a street vendor at the big
market for 350,000 Malagasy ariary (about thirty-five dollars)—a great deal of money
locally.
24. Elisabeth Hsu (personal communication) has pointed out that some people get around
this by building family tombs.
25. The fact that that I have not always been able to clarify a consistent distinction between
Seele (soul) and Geist (spirit) is possibly due not only to insufficient fieldwork but because the
very ambiguity or incommensurability between the terms soul and spirit, and between both
terms and body (Körper), is necessary in order to retain other ideas alongside and in no direct
opposition to or confrontation with Christianity or science.
26. This is, of course, an extension of the argument of Evans-Prichard (1937).
27. The influence has not been entirely one-way. Homeopathic medicine, which was a
development from alchemy insofar as it is also based on the reduction of the material toward
its nonmaterial essence, has had enormous success in India.
28. See, for example, the book compiled by a group of Catholic anthroposophists (Branche
Nicolas de Flue, de Fribourg 1994).
29. What passes between the generations includes half the genetic substance of each par-
ent (so in genetic transmission, there is half life and half death . . .), mimetic replication or
resemblance, and memory. Thanks to interlocutors in Nanjing for pointing this out.
30. With thanks to Shao Jing.
31. My thanks to Katie Kilroy-Marac for this point.
32. Questions and comments have addressed such issues as abortion and organ transplan-
tation.
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———. 1997. Belief, Ritual and the Securing of Life: Reflexive Essays on a Bantu Religion. Leiden:
Brill.
Strathern, Marilyn. 1988. The Gender of the Gift. Berkeley: University of California Press.
Vaughan, Megan. 2008. “ ‘Divine Kings’: Sex, Death and Anthropology in Inter-war East/
Central Africa.” Journal of African History 49:383–401.
AFTER LIFE • 6 47
36
A GOOD DEATH, RECORDED
Robert Desjarlais
Many deaths in the world are quite normal, in the sense that people die in familiar cir-
cumstances, unmarked by situations of violence or terror where normally available
modalities of cessation, ritual, and mourning cannot be accessed.1 The manner and
formations of such unexceptional deaths speak to the ways in which certain features of
human existence—such as consciousness, identity, memory, desire, bodiliness, and
relationality—are enacted and dissolved through a range of social and ritual practices.
This is evident among the Yolmo people, an ethnically Tibetan Buddhist people from the
Yolmo region of Nepal with whom I have conducted research during the past twenty-five
years. For many Yolmo families, transformations recurrent in life contribute to how
people make sense of dying, loss, and mourning. “The dead are attached to the living,
and the living are attached to the dead” runs one Yolmo saying. The task of the living is
to cut off the deceased from their world, to diminish that person’s attachment to that
world, to the point of a zero-degree desire. The living, the dying, and the recently dead
are thus engaged in delicate technologies of cessation and transformation. Life itself is
generative, even within the burned-out shadow of death.
Some combination of these themes was evident in the makings of a death that I
came to know about in the course of conducting ethnographic fieldwork in Nepal in
2001. In August of that year, while living in the Boudhanath area of Kathmandu, I
watched a video recording that documented the passing of an elderly man I will refer to
as Sange’s father. The man cast on the screen was on the margins of death, and then
beyond.
64 8
Sange’s father was a well-respected head of a Yolmo family. Late in life, he had moved
with his wife to Kathmandu, and they lived in a three-story house on the outskirts of
Boudhanath. Sange’s family and his mother and father shared the second floor with an
unmarried sister and aunt. In the mid-1990s Sange obtained a visa to travel to the United
States. He arrived in New York City, and has lived and worked there since, phoning home
often to speak with family. His wife joined him in New York in late 2001, after receiving
a visa of her own, and she soon gave birth to their third daughter.
In 2001, I lived for two months in a room on the second floor of this family’s house
in Nepal. The father’s absence was noticeable in the house. It was evident in the quiet of
conversation and the stillness of rooms. The father had died in 1999, after a lengthy ill-
ness. It was Sange’s niece Tshering, a young woman who lived on the top floor of the
house, who alerted me to the video’s existence. When I asked Tshering if it would be
possible for me to see this video, she said that would be fine, but noted that it was at her
aunt’s house. “It will be good to watch it there,” she said. “Because when it’s shown
among close family members, they cry. It’s difficult for them to watch it.”
A few days later, early on a Saturday afternoon, my friend and then research assistant
Temba Yolmo and I met Tshering at the home of her father’s sister, and the three of us
watched the video together on a large color television set. We sat in a tidy room with fam-
ily photographs on a mantel, thangka paintings on the walls, and a portrait of the Dalai
Lama close to the altar. I felt uncomfortable, voyeuristic. I was watching the intimate
visual record of the death of a man I had never met in life. Temba and Tshering appeared
to be fine with the viewing, perhaps because they had seen videos of this sort, but also,
perhaps, because they were more at ease with death than I was. They commented on the
events playing out on the screen, and I took notes.
The video contained a series of unedited segments, recorded on successive days. The first
segments showed scenes of relatives and friends visiting to sit with the dying man in the
home’s main room. The man sat, and rested, in his bed. He appeared gaunt and weak, with
tired eyes. He looked at his guests when they spoke, and nodded at what they said. At times
he contributed to the conversations in a faint, measured voice. His wife sat on the floor in the
room amid a group of women. She was quiet, looking on, and listening to the conversations.
In one scene of the video, the father, smiling, with his eldest son by his side, handed an
envelope to another man, while others looked on approvingly. Temba told me that the son
had given his father a significant amount of money, which he donated to a temple in the
Yolmo region. Images followed of people visiting, and family members preparing food in the
kitchen. The video then cut to a scene at night, when the man was dying. Several men talked
quietly among themselves, in the room with him, as though to help him die peacefully.
Soon after, a lama, a Buddhist priest, leaned over the man to check his breathing. He
determined that he had died. He draped a white cloth over the body. People whispered
and stepped silently about the room.
“He looked quite alive, but also weak, and somewhat vacant,” I wrote in a notebook
later that day. “What must it be like to know you’re dying, and these people have come
Many people used to visit our house to see my father-in-law. When they did so, he would
sit with them and say to them, “Now, as it is my age to die, so I have to die. But don’t be
upset or sad.” He was not afraid even of his death. He was satisfied because all of his sons
had work of their own, and they all are responsible and can look after their families. All of
these thoughts made him relaxed and satisfied.
He became sure of his death, so he called all his sons, one of whom was in India, and
another who was in America. The eldest one was in Nepal itself. He asked one of the sons,
who was in India, to come back as early as he could, because now he was about to die.
A few male relatives were staying here to look after him. I gave soup to him and after tak-
ing my dinner I went to sleep. His wife was in his room, looking after him.
65 0 • ROBERT DESJARLAIS
Suddenly he put his rosary down on the table. It made a loud noise. He never put his
rosary down like that, but when his wife asked him what had happened, he told her that
he wanted to go to the toilet. Then she called a few men to take him to the toilet. After they
took him there, they set him on the bed, and he fell unconscious, without any pain. After
that we called the lamas, and they did a pūjā [ritual].
Others spoke of how Sange’s father died a peaceful death, without fear, and with little
longing for the life he was leaving behind. He knew he was dying, but he was at ease with
that fact.
“When I saw him in those days, I saw that he was very confident,” Pemba’s brother
Karma, a good friend of mine, told me. “He didn’t appear nervous about it,” he contin-
ued. “ ‘Who knows? Tomorrow, or the day after, my breath will go.’ That’s what he was
saying, calmly. We felt uncomfortable, but he did not.”
“He wasn’t afraid at all,” I proposed.
“No, he wasn’t. Not at all. He wanted to hear the ‘Liberation upon Hearing in the
Between,’ because he knew that the time was near.2 And my brother Sonam was there,
explaining everything. He [my father] even stopped his son from coming from America.”
“To me,” I said, “in seeing him on the video, it was like he was going on a trip, and he
was saying good-bye to people.”
“Yes, to him it was just like that,” Karma answered. “To him it was just like he wasn’t
going to see these people anymore.”
“Is it usually like that, or was that exceptional?”
“Not everyone is like that. In his case, I don’t think he was in so much pain. And some
people are in a lot of pain, and that’s a totally different situation.”
Sange’s father, certain of his death, prepared for it. Content that it was his time, he
was spiritually engaged until the end, his family beside him and his desires fulfilled. He
died at home without fear, regret, or longing for the world.
Yolmo Buddhists are often concerned with a good death, one that helps them to achieve
liberation or a good rebirth. Undertaking a quiet apprenticeship on the matter, they often
adopt a number of techniques that help them to die well, from preparing for their deaths,
to giving a last testament in their final days, to forging a calm and peaceful state of mind
in the hours of their demise. Family and friends often help in these endeavors. They try
to calm and support the fading loved one, help him to sever his attachments to his life,
exchange final words and glances, and accompany him in the process of dying, up to the
“mouth” of death itself. As Yolmo people envision it, after a person dies, his conscious-
ness departs from his body and enters into a phantasmagoric liminal realm between one
life and the next, known as the bardo. This “between” can last up to forty-nine days after
the death—until the consciousness moves into a new life-form and is subsequently reborn
65 2 • ROBERT DESJARLAIS
Karma Gyalsten Yolmo in my efforts to write anthropologically about Yolmo lives and life
more generally. When I introduced to him the idea of relating Yolmo lives and deaths to
the concept of poiesis, he immediately warmed to the idea and its implications, and he
grasped, more than I did then, its pervasive relevance for Yolmo lives. “It fits into so
much of what Yolmo people are concerned with,” Karma said. “There is a focus on creat-
ing things in a more beautiful way. Fashioning—that’s a good word. . . . So much is about
composing and creating.”
While ideas and doings of poiesis are central to many Yolmo lives, they involve only
one particular cultural rendering of something at work in the lives of peoples throughout
the world. Poiesis is found in the strivings of all peoples—and, perhaps, of all life forms
more generally. Poiesis is there in the urge people have to make something of, and in,
their lives, both individually and collectively. It ties in to Spinoza’s (1985) idea that “[e]ach
thing, as far as it can by its own power, strives to persevere in its being,” and it has reso-
nance with Gilles Deleuze’s philosophy of becoming (2001). It echoes Kathleen Stewart’s
considerations of “cultural poesis,” which she richly locates in “the generativity of emer-
gent things” (2005). And it parallels a theme in Michael D. Jackson’s writings on the
generative capacities of human beings (2005, 2011). There is a creative tendency in life
itself. Poiesis is found in moments of joy and suffering, and of life and death. It is
inscribed in the very fact of rituals. Something is made present when something else is
no longer present.
The catch to all of this is that those weavings often run up against the strivings of
others similarly intent on making something of their lives. We all know of moments of
counterpoiesis: a boy at play crosses creations with a man at play. Or, more harshly, our
efforts hit up against the world at large, blind and inert to human strivings: a man
respected by his community for his inspired, generative contributions to their lives falls
ill of a sudden fever, and dies. A “coefficient of resistance” is involved in any human striv-
ings in life, to use a term of Sartre’s (1963, xii). People create and fashion, most often,
within situations of struggle, denial, want, and the wastages of time. There is a recurrent
tension between what people aspire to in their lives and the forces that shape and con-
strain those lives.
One significant way that this tension takes form in Yolmo lives ties in to ideas of
karma. Karma involves a kind of natural poiesis, in that a person’s deeds, positive and
negative, bear “fruit” down the road. It is a matter of karmic “cause and effect,” wherein
a person reaps what he has sown, even if that sowing occurred in previous lifetimes of
his. Karmic forces bring forth certain situations, be they a stretch of happiness or a life-
time of hardship, and there’s not much that a person can do to change that. He or she
can, however, strive to generate positive karma, by undertaking virtuous deeds and “cut-
ting” negative ones. Many a Yolmo life—and death—is founded on an intricate play
between the generative designs of karma in a person’s life and that person’s attempts to
steer the consequential flow of karmic actions. While a person might strive for a good
death, for instance, he and others know well that his karmic heritage will play a large role
Each of these efforts plays a central role in how Yolmo peoples go about their lives, as
well as how they tend to moments of death and loss. Rituals are performed. Conscious-
nesses and memories are fashioned and refashioned. Selves are made.
And selves are unmade. The procedures of dying and death often entail a poiesis of
cessation, in the seemingly paradoxical sense that a dying self endeavors to dissolve its
self. As was the case with Sange’s father, there is often a gentle art to dying. Dying often
emerges as an active, conscious project in life, as an action to be undertaken. A person
strives, often with the help of others, to create the conditions whereby she can contribute
to the creative subtraction of her place within the world. Many strive to craft appropriate
states of mind while dying. They try to dissolve their attachments to the world, visualize
the forms of Buddhist deities, and contemplate the impermanent nature of all life.
Through these efforts, a person can maintain some control over the dying process and
be conscious of his or her passing.
Mourners, in turn, try to facilitate these endeavors on behalf of lost loved ones, while
trying to abate their own attachments to them. Much of the dying process and the crema-
tion and funeral rites orbits around an intricate making of unmaking, a calm forging of
undoing, dissolving, and stillness. Attachments are diminished, sensory engagements
extinguished, and the now-gone one is resolved of his worldly existence. In many
respects, these efforts fit well with the intent of Buddhist teachings and practices, which
tirelessly work toward the idea of letting go of ego, attachments, sensory dependencies,
65 4 • ROBERT DESJARLAIS
and the sense of a solid and unchanging self in the world. Dissolving, taking away, releas-
ing, removing, until all is emptiness, until the self itself is stilled: these hard-gained
endeavors apply both to Buddhist practices and to Yolmo methods of dying and postlife
transformations. In thinking of how people engage constructively in the world, we need
to entertain Buddhist ideas of “taking away” and consequential “nondoing” as much as
we do Western philosophical ideas of poiesis as entailing a directly active “bringing
forth.” Stable ideas of active and passive break down here. At the same time, poiesis here
implies a tentative making and fashioning, one couched in the virtuality and imperma-
nence of its own constructedness.
Given that people usually do not engage in these efforts on their own, it’s clear that
much of the “bringing forth” that takes place in situations of dying and death, as in those
of life, have a decidedly social cast to them. Most often what is involved is a kind of co-
poiesis, of a collaborative fashioning and unfashioning of self and other, as well as of a
poiesis-on-behalf-of-another. What people often bring forth, or dissolve, is on behalf of oth-
ers. This is particularly crucial after a person dies, since the dead can accomplish little
on their own as they roam a “land without power,” a domain where they no longer have
powers to act. They cannot effectively “act” or “produce” anymore or alter their karmic
heritage in any forthright way. They must rely on the living to do this. The ritual assist-
ance is a welcome responsibility, since the living long to act in ways that can benefit lost
loved ones. These efforts at the cooperative enactment of assisted cessation trip up prev-
alent ideas of agency in Western social and political thought, which often paint “personal
agency” as being a question of actions undertaken by individuals, often while under the
constraining weight of political forces.
The designs most in circuit here involve social and ritual practices whose effects are
to transform people or situations in some way. The actualities and virtualities generated
in these moments are in line with a world familiar with tantric energies and transforma-
tive intensities. They proceed without any single author or known agent. They have
powerful effects in and on life.
There is a singularity to many deaths. Something in the way the details of a death
unfold makes them stand apart from the typicality of cultural discourses and representa-
tions or any general story one might want to tell about how women and men die. Dying
unsettles the same, the familiar, the expected—much as life does, when it comes down
to it. It’s also true that death is cultural, that dying and cessation take on particular forms
in distinct social and historical settings. Certain “dying scripts” (Green 2008, 11) are
often at work in such settings. Most Yolmo people desire to die as Sange’s father did—in
their homes, among loved ones. The dying should be at ease, surrounded by family
members, relatives, and friends, without fear or longing, prepared to die. While many
say it’s best to die while sleeping, with an absence of awareness, others, especially those
familiar with Buddhist principles, find it’s important to die while awake and conscious
of one’s death. In that way, a person can say good-bye to loved ones on good terms and
embrace new situations to come.
65 6 • ROBERT DESJARLAIS
compassionate, and patient attending to a person’s cessation than any kind of radical
efforts to forbid the death from happening. There is caring comfort in the face of death,
but there is also a sense of quiet restraint and “practices of nondoing” (Sedgwick 2003,
175). This sentiment can be compared with the combative zeal that medical practitioners
in Europe and the United States often show in trying to preserve a life.
The generative dimensions of Yolmo lives and deaths are as much in evidence in the
funeral rites that follow a death as they are in the life that precedes those rites. The funeral
rites, which are usually performed in the first seven weeks after the death, similarly
involve ritual and sensorial means to transform situations, consciousnesses, relations,
and the phenomenal grounds of people’s lives. One aspect of the rites that is worth noting
here is that a series of tangible images of the deceased serve to simulate the deceased’s
identity, as it changes through time. Each of these images is first invoked, and then taken
away, by being either burned or dismantled.
In the hours and days immediate to a death, the corpse is prepared for the cremation
and visualized as a deity. It is then cremated in an elaborate ceremony of dissolution and
ritual sacrifice. Once the cremation is completed, a malsa, or “resting place,” is made and
set up in the home of the deceased. Composed of the former clothes of the dead person,
this resting place serves as a way station whereby the consciousness of the deceased can
remain in its former home. The malsa is later dismantled and the clothes discarded.
During the first main funeral rite after the death and cremation, a jhang par, or “name
card,” is used. This piece of paper often holds the printed figure of a human being on
one of its sides, and prayers on the other. The name of the dead person is written in an
appropriate place in these prayers. At the crux of the ritual proceedings, a lama summons
the consciousness of the deceased and then transfers it into the “name card.” The lama
burns the print just as he “elevates” the consciousness to the Pure Land of Amitābha.
The consciousness is elevated, lifted up, and transported to a purer, more enlightened
realm, just as the name card, and the figure and identity inscribed within it, are dissolved
into flames.
During the final funeral rite, commonly held in the seventh week after the death, a
life-size effigy of the deceased is often made. Built out of the clothes of the dead person
and adorned with a sheer white cloth of a face, it is set up at the site of the funeral
proceedings. People tend to treat the effigy as a simulacrum of the deceased, and they
often relate to it as though the dead person’s consciousness is inhabiting that lifelike
form. A name card is again produced and again set to flames to a flurry of dramatic
music. At this moment, the effigy is dismantled, leaving a pile of loose clothing.
The effigy’s sudden dissolution serves as an object lesson in the methods of life,
death, and impermanence. The presence-then-absence of the effigy nods, again, to the
constructed, relational, and empty nature of all reality. The act of “dismantling the effigy”
65 8 • ROBERT DESJARLAIS
to certain causes” (2004, 6). The funeral rites convey just this lesson. A Buddhist phi-
losophy of life and death is conveyed, but through ritual practice rather than explicit
statement or textual exegesis. Traces of a person are here, then gone, present and absent
afresh, in a cycle of rebirth and redeath. Form flows into formlessness, and then tides
back to form and formlessness again, with neither of these ever fully complete.
Seen from another perspective, it may well be that the recurrent reinvocations of the
deceased involve a play of ambivalence. Mourners want to hold on to their lost loved one,
to preserve their ties to the deceased, to keep the deceased alive and present in their lives
and thoughts, as though he or she were not really dead. But they also concede that it’s
best to sever attachments and help the consciousness of the deceased wean itself from
its present life and move on to a next life. Stay, don’t go. You must go, the rites seem to be
saying. In line with this tug-of-war of competing desires, presences of the deceased are
invoked and then undermined in the same ritual breath. Care for a corpse, but eliminate
it. Call the consciousness back to the house, only to tell it that it must leave. Construct
an effigy, then dismantle it. Retain, yet relinquish. The funeral rites tender a theater of
ambivalence. They gird this wavering ambivalence, make a theme of it.
The funeral rites also mark the progression and passing of time, both through the
weeks-long expansion of the rites and by route of the churning transformations and
temporal density of so many ritual moments. As such, the rites show how the passing of
time inevitably involves difference and change.4 Does this pressing sense of temporal
difference help mourners to grasp how the forms of their loss can come to be altered?
L I V I N G A N D DY I N G
As the years march on, my work with Yolmo people has led me to better appreciate the
intricate weave between life and death. When I began this research on dying and death
among Yolmo people, more than a decade ago, I saw in death endings only, a terminus
of life and relation. It’s now clear that with many unexceptional deaths new connections
take form, in vast swirls of continuity. Mourners find new ways to relate. They rethread
linkages, with the strands available to them. They sustain contact through specific remem-
brances, through a strong sense of ritual responsibility, through offerings of food and
sensate touch, through new involvements and a fix of imaginative and ritual efforts. The
living keep lost ones “near.” Rituals fill in the blankness. The pulse of life finds new chan-
nels. Life itself is generative, transitive, echoic.
All of this might help us to glean a better angle on life more generally. Death is often
taken to be the absolute other of life. Yet it can also be said that the words life and death
mark situations more complicated than that binary arrangement alone. Being alive is
clearly different from not being alive; there is a “difference of kind” between the two, not
simply a difference of degree.5 Yet the ever-changing flow of life and death, presence and
absence, includes varying intensities and thresholds of existence, the circling of memo-
ries plush with life, moments at once actual and virtual, ghosts as real as people and
N OT E S
1. For recent anthropological accounts of death and dying in a number of societies, see
Scheper-Hughes 1993, Lock 2002, Kaufman 2006, Pinto 2008, Desjarlais 2002, Das 2007,
and Green 2008. For accounts of death in Tibetan Buddhist societies, see Mullin 1988, Thur-
man 1994, and Dorje 2006.
2. The “Liberation upon Hearing in the Between,” written as bardo thos grol in Tibetan, is
a set of mortuary texts that detail what people can expect to encounter during the phantasma-
goric journey through the bardo “between” that follows a death. Usually pronounced as “Bardo
Thedol” in Yolmo, thought to be authored by the great master Padma Sambhava in the eighth
or ninth century, used primarily by adherents of the Nyingma sect of Tibetan Buddhism, and
famously and somewhat inappropriately known in the West as “The Tibetan Book of the Dead,”
the set of texts explains in great detail what a person can expect to occur in the hours and days
after dying. If a reader or listener understands the texts’ teachings well, it is held, he or she
can achieve liberation from the world of samsara.
3. I take the term spectral subject from Boulter 2008.
4. This observation relates to Henri Bergson’s idea that time—and life more generally—
imply processes of differentiation and novelty, as evident in his claim that “[t]ime is the invention
of the new, or is nothing at all” (Bergson [1907] 1998, 340). On this see also Marrati 2011, 48.
5. To use terms of Deleuze (1994, 4).
REFERENCES
Arendt, Hannah. 1958. The Human Condition. Chicago: University of Chicago Press.
Bergson, Henri. (1907) 1998. Creative Evolution. New York: Dover Publications.
Boulter, Jonathan. 2008. Beckett: A Guide for the Perplexed. New York: Continuum.
Das, Veena. 2007. Life and Words: Violence and the Descent into the Ordinary. Berkeley: Univer-
sity of California Press.
Deleuze, Gilles. 1994. Difference and Repetition. New York: Columbia University Press.
———. 2001. Pure Immanence: Essays on a Life. Cambridge, MA: Zone Books.
Desjarlais, Robert. 2002. Sensory Biographies: Lives and Deaths among Nepal’s Yolmo Buddhists.
Berkeley: University of California Press.
Dorje, Gyurme, trans. 2006. The Tibetan Book of the Dead: First Complete Translation. Edited
by Graham Coleman with Thupten Jinpa. New York: Penguin Press.
Anne Allison
Despite their ubiquity in a country that is demographically aging, old people are disap-
pearing in Japan. Or at least that was a lead story in August 2010: the case of the missing
elderly. On August 4, the headlines read: “Fourteen elderly, status unknown.” By the next
day, the number had risen to thirty-one nationwide. And by the 6th, forty-nine centenar-
ians couldn’t be found. “Whereabouts unknown” (shozai wakaranu); “existence unclear”
(kōreisha fumei); elderly gone (“Kobe, 100sai ijō 105 nin fumei” 2010).
August is marked by searing heat and memorialization of the dead. This is the season
for Obon, the Buddhist custom of returning to the family grave to honor and rejoin
deceased spirits. This makes it (also) a time when Japanese go back to natal homes, often
in the countryside, for a short respite from work and hectic lives to gather with family.
As things slow down and bygone times are revisited, Obon stirs up an affective cocktail—
of longing, nostalgia, and anxiety—around home. It was in this season, of dead spirits
and heat, that police investigated the whereabouts of its centenarians. What started
things off was a would-be birthday greeting. But when local officials visited his home in
Adachi ward, Tokyo, on what should have been his 111th birthday, Katō Sogen turned out
to be a mummy, dead for almost three decades. A seventy-nine-year-old daughter admit-
ted she had kept his body since the late 1970s to pocket the man’s monthly pension
payments. In a nation priding itself on having the highest longevity in the world (86.4
years for women; 79.59 years for men) and on keeping fastidious official records on all
matters of life and death, the news disturbed people. Local governments responded
immediately. Sending out teams of investigators to check on the whereabouts of their
662
own centenarians, they discovered that many, in fact, were missing, unaccounted for, or
already dead.
In some instances, it was clear that deaths had been willfully concealed so family
members could gather pension payments. But more often neglect was to blame. Neglect
in the reporting of death by family members and in sloppy record-keeping by govern-
mental officials. And neglect in the treatment of the elderly themselves by a social order
where filial piety, once considered sacred, had obviously slipped. In asking citizens about
their elderly, the police often learned that families didn’t know where they actually were
or even, in some case, if they were still alive. As with one resident in the Minato district
of Tokyo whose records reported him to be 105, the family responded about his wherea-
bouts: “He left home several years ago. But where he went then or whether he is dead
now, we don’t know” (“Fumei 100 sai ijō 279 nin” 2010). After a month of investigations,
the government announced the tally; more than 230,000 centenarians who had been
listed as still alive on government records were actually missing and assumed to be dead.
But there was one upside to the story. Regarding Japan’s claim to the highest longevity
in the world, the government assured the country that this statistic, at least, was still
intact.
The case of Japan’s “disappearing old people” (kieta otoshiyori) rubbed a raw nerve. It
was another sign of “Japan’s loss of relationality in family and community alike,” as com-
mentators decried. More evidence of Japan’s “relationless society” (muen shakai)—a
phrase coined by NHK, Japan’s national broadcasting network,1 in a much-publicized
special it ran in January 2010 on a related phenomenon: the incidence of elderly Japanese
who die all alone in their homes. Here, in gritty relief, the reportage showed the desperate
straits of isolated elderly trying to survive daily life, as well as the cleaning service that
comes in to mop up after they’ve died—usually throwing everything away because no one
is willing to claim the remains. The traces of a person’s life, and that life itself, treated as
garbage. On the screen, the number “32,000” kept flashing to indicate how many elderly
had died alone the previous year in Japan—a new condition that is called both “lonely
death” (kodokushi) and “relationless death” (muenshi). At a time when one-third of all
Japanese and 23% of the elderly now live alone—and when the overall population is
shrinking due to low childbirth but the percentage of those who are aged is expanding
quickly—the incidence of lonely death is on the rise. The rate has tripled over the last two
decades (Manabe 2012), and stories of decaying or mummified remains discovered in an
apartment or room where someone has lived isolated for years have become common-
place. Approximately twenty lonely deaths occur nationwide every day, with the rate dou-
ble for men, higher in the cities, and the discovery of bodies after the fact (part of the
definition of “lonely death”) averaging twelve days for men and six days for women.
Friends sobbed when watching the NHK special, they told me, out of sympathy for those
profiled on the show but also out of identification with the state of solitude so wretchedly
portrayed—something they’d experienced already or could well imagine becoming
entombed in themselves as they aged.
I N T E R E S T E D B E L O N G I N G : T H E C O R P O R AT E FA M I LY S YS T E M
Disinterest is akin to dis-belonging: a part that becomes extraneous to the entity that no
longer incorporates it and expels it as waste. The quality of being needed is “the first and
most common use of the word human,” Tova Hojdestrand writes in her book on home-
lessness in postsocialist Russia (2009, 10). Treated as social waste and excluded from a
moral community, the homeless are “needed by nobody” because they lack what is needed
to acquire identity and citizenship: a proper residence and the papers (propiska) to show
it. In this sense, social waste is a result of modern social design: of creating human
“leftovers” because its resources—including housing—are distributed according to a
model of what society should be like and how its members will (or won’t) fit in.
In Japan, human leftovers get created according to a social design premised on both
family and economics—and their intertwinement in postwar Japan under state-spon-
sored corporate capitalism (“Japan Inc.”), rapid urbanization and industrialization, and
a decrease in family size along with its nuclearization. Family and workplace became
ensconced together in a vise of competitive productivity: the “family corporate system”
in which belonging was tied to role, geared to productive output, and morally infused.
This meant men put in long hours at work as “corporate warriors,” women devoted
themselves to running the household and raising children as “education mothers,” and
children trudged between school, cram school, and desks at home in study regimens
programmed to ensure academic success (Allison 2012).
Designed according to a model of competitive capitalism, the family operated as a
distributive mechanism (for extending the “family wage” of the breadwinner); as a priva-
tized machine of social reproduction (ensuring longer working hours and more labor
extracted from core workers—mainly men); as a disciplinary apparatus (extracting high-
fueled competitiveness from its members); and as the de facto care provider (so the state
could save on welfare expenditures) (Weeks 2011). In Miranda Joseph’s terms, the “com-
munity” of family serves as a supplement to capital: “a surplus that completes it, provid-
ing the coherence, the continuity, the stability that it cannot provide for itself, although
it is already complete” (2002, 2). Supplementary (but instrumental) to capitalism, the
family engineers competitive productivity in return—as the bargain went in postwar
Japan—for security and prosperity of daily life. And, indeed, this bargain worked well
If the logic of familial/social value is economic productivity, then those who are unproduc-
tive in an era of increasing socioeconomic precarity risk being abandoned as waste; needed
P O S T- P R E C A R I O U S P O S S I B I L I T I E S
But the family is not only getting playacted, kept alive by staging its performance in ritu-
als paid for by Japanese who feel lonely for, or abandoned by, its (cruel) optimism. Out of
the very precariousness of social living today—an age when more Japanese live alone,
more are falling into the ranks of the working poor or un(der)employed, and more public
67 0 • ANNE ALLISON
with relatives elsewhere in Japan. Alongside such “diaspora families” were also high
numbers of elderly already living alone and a random mixing of people from different
locales. As evacuees started moving into temporary shelters three months after 3.11, these
jumbled living arrangements often continued for people dislocated multiple times over.
One year later, 41,236 were still living in these shelters, sometimes anticipating a stay of
far more than the two years originally predicted. Yet multiple initiatives sprang up—
many infused by the energy of NPOs, volunteers, schoolchildren, and vacationers incor-
porating volunteerism in Tōhoku into their summer trips—to mitigate the alienation and
disrupture faced by the displaced. In Sumita, Iwate, at a slight remove from where the
tsunami struck, for example, it was the town itself that came forward to help build tem-
porary shelters for evacuees from neighboring towns, to pay the extra costs to make these
out of wood (instead of metal), and to help on a daily basis in providing services. And the
town of Ōfunato provides an emergency service on cell phones for all its residents living
in temporary shelters. If someone is in danger or just needs to talk, he or she can reach
an operator anytime, day or night. The incidence of lonely death is proportionately far
less following 3.11 than it was after the Hanshin earthquake in Kobe in 1995 (thirty-three
reported by July 2012, compared with forty-six the first year alone following Hanshin),
probably due to such measures to ward it off (Manabe 2012).
But this does not mean that a social otherwise is, or should be, limited to the realm of
the living per se—or to the realm of giving life to those dying (otherwise) alone. Some-
times it may be in death (or its in-betweenness with life) that sociality gets not only
deframed but potentially reframed (Grosz 2008). I see such a possibility in a movie that
was released the summer following 3.11 that tells a story about a man who dies what
would be categorized a lonely death. Before that, however, he exists in a zone of social
abandonment where he—already dead in multiple ways—exhibits a kind of longing
nonetheless. Like J. M. Coetzee’s Michael K, this is a man whose life is pure bios and who
lives—dead and missing to others—in a state of near (but not quite) human extinction.
The rhythms and textures of this life—socially bare, existentially immediate, humanly
ambiguous—point to something not yet known or in place. How to be in and belong to
the world beyond the social death of lacking a job, having no family or spouse, being no
longer productive or without secure income or career. Already dead but not expiring right
away: a gesture to something else (if not quite yet).
Set against a backdrop of sunflowers (which became a symbol of the rebirth of Japan
following the crisis because, growing fast and tall, they also absorb radiation from con-
taminated soil) and based, in part, on a true story, the film The Dog Who Protects the Stars
(Hoshi Mamoru Inu) tells the story of a middle-aged man who, after losing his job through
restructuring, falls into a funk.5 Sitting at home doing nothing to find a new job or help
around the house, he becomes crabby to his daughter and wife, who eventually asks him
for a divorce. Agreeing to leave his family because he feels he already has done so by no
longer being able to support them as breadwinner, “Father”—as the fallen patriarch is
identified throughout the film—is now uprooted from both family and job. Becoming
LONELY DEATH • 6 71
homeless, he hits the road in his van and takes the family dog, ironically (or not?) named
“Happy.” The two wander the country from place to place: cashing in on a coupon he has
at a B and B, trying to sell some of his possessions at a resale shop, befriending a young
teenager he meets at a convenience shop (who subsequently robs him of his money),
ending up in a café on the beach where he spends the last cash he has on a cup of coffee.
On this journey to nowhere and in a temporality that is endlessly now, Father manages
to keep going. But when he runs out of funds and can no longer afford gas, he parks the
van in a forest preserve, where he and Happy scavenge the garbage bins for food.
But once winter sets in, Father grows weak. Despite the bits of food his dog retrieves
from a nearby town, he eventually dies—a death scene that goes on for nearly half an hour,
aestheticized in close-up scenes of Father’s dying face. His dog survives him. But not for
long. Soon Happy dies, too. Right next to Father, on the front seat of the van. When the
two bodies are discovered by an official from the local municipal office, a man who is
socially disconnected as well (which is a subtext of the film—the two stories of solitary
men playing off one another throughout), he notices the cross of a grave built by the side
of the car for Happy. Something about this story, and the grave the dying man built for his
dog, inspires the younger man who, in the course of tracking the older man’s road trip,
befriends a teenage girl and winds up with a dog himself. As the director has said about
the film, he intended it to be about a kind of hope that comes from refusing to abandon
longing. About finding a way to live despite, or within, being (socially) dead already. About
living, then, in a new way. In a new social tense.
In the film, though, Father does die. And he never reaches out to seek assistance from
places or people who may have been able to prevent him from dying as he does. His pro-
file is that of the typical victim of lonely death: a middle-aged man, impoverished and out
of work, estranged from family and friends. The collapse of the patriarch who abandons,
as much as is abandoned by, the family when his role as breadwinner dries up. But in this
case, the man does not die entirely alone and has found not only a companion but also a
“longing” in the life he has right up to death. This is something. Or, as Elizabeth Povinelli
(2011) puts it, it is between something and nothing. Where potentiality of elsewhere
begins. From death (of family-man) to something, possibly, else.
A not-yet sociality playing off the borders of living, dying, and the ways we construct
the in-between.
N OT E S
67 2 • ANNE ALLISON
4. Adopted at marriage.
5. Based on a manga (comic book) by the same name and directed by Takimoto Tomoyuki,
the film was released in Tokyo on June 11, 2011 (three months after 3.11).
REFERENCES
Akagi, Tomohiro. 2007. “ ‘Kibō wa sensō: Maruyama Masao’ o hippatakitai 31 sai furīta.” Ronza,
January, 53–59.
Allison, Anne. 2006. Millennial Monsters: Japanese Toys and the Global Imagination. Berkeley:
University of California Press.
———. 2013. Precarious Japan. Durham, NC: Duke University Press.
Amamiya, Karin. 2007. Ikisasero! Nanminkasuru wakamonotachi. Tokyo: Ōtashuppan.
Berlant, Lauren. 2011. Cruel Optimism. Durham, NC: Duke University Press, 2011.
Butler, Judith. 2009. Frames of War: When Is Life Grievable? New York and London: Verso.
Cazdyn, Eric M. 2012. The Already Dead: The New Time of Politics, Culture, and Illness. Durham,
NC: Duke University Press.
Edelman, Lee. 2004. No Future: Queer Theory and Death Drive. Durham, NC: Duke University
Press.
“Fumei 100 sai ijō 279 nin.” 2010. Asahi Shimbun, August 31.
Grosz, E. A. 2008. Chaos, Territory, Art: Deleuze and the Framing of the Earth. New York: Colum-
bia University Press.
Hojdestrand, Tova. 2009. Needed by Nobody: Homelessness and Humanness in Post-Socialist
Russia. Ithaca, NY, and London: Cornell University Press.
Joseph, Miranda. 2002. Against the Romance of Community. Minneapolis: University of Min-
nesota Press.
“Kobe, 100sai ijō 105 nin fumei.” 2010. Asahi Shimbun, August 11.
Lingis, Alphonso. 1994. The Community of Those Who Have Nothing in Common. Bloomington:
Indiana University Press.
Manabe, Hiroki. 2012. 3.11 kara kangaeru “kazoku.” Tokyo: Iwanami Shoten.
NHK purojekuto. 2011. Muen shakai. Tokyo: NHK shuppan sha.
Nihon kodomo sōshyaru wāku kyōkai. 2005. Kazoku nishite hoshikoto shite hoshikunaikoto.
Tokyo.
Nishikawa, Atsuko. 2012. Otona no tame no shea hausu annai. Tokyo: Daiyamondosha.
Osawa, Machiko. 2010. Nihongata-Working Poor-no Honshitsu. Tokyo: Iwanami Shoten.
Povinelli, Elizabeth. 2011. Economies of Abandonment: Social Belonging and Endurance in Late
Liberalism. Durham, NC: Duke University Press.
Slater, David, Keiko Nishimura, and Love Kindstrand. 2012. “Social Media, Information and
Political Activism in Japan’s 3.11 Crisis.” Asia-Pacific Journal, June 11. Accessed August 30,
2012. http://japanfocus.org/-Nishimura-Keiko/3762.
Standing, Guy. 2011. The Precariat: The New Dangerous Class. New York: Bloomsbury
Academic.
Takeda, Hiroko. 2008. “Structural Reform of the Family and the Neoliberalisation of Everyday
Life in Japan.” New Political Economy 13, no. 2 (June): 153–72.
LONELY DEATH • 6 73
Weeks, Kathi. 2011. The Problem with Work: Marxism, Feminism, Antiwork Politics, and Postwork
Imaginaries. Durham, NC: Duke University Press.
Yamada, Masahiro. 2001. Kazokutoiu Risuku. Tokyo: Keiso Shobō.
———. 2003. Kibō kakusa shakai: “Makegumi” no zetsubōkan ga Nihon o hikisaku. Tokyo: Chi-
kuma Shobō.
Yuasa, Makoto. 2008. Hanhinkon: “Suberidaishakai” kara no dasshutsu. Tokyo: Iwanami Shin-
sho.
67 4 • ANNE ALLISON
38
CHEMONOTES
Harry M. Marks
Harry M. Marks died on January 25, 2011, at the age of sixty-four. The following emails were personal
reflections that he shared with family members, friends, and colleagues during his time as an
outpatient undergoing treatment for prostate cancer. Posthumously published in Social History of
Medicine 25, no. 2 (2012): 520–39, they are reproduced here by permission of Oxford University Press
on behalf of the Society for the Social History of Medicine.
15 A U G U S T 2 0 0 9
“MY, WHAT BIG TEETH YOU HAVE GRANDMA!”
Chemotherapy, I can now see, is going to be like those weekly serials my dad used to
watch as a boy at the movie theatres in western Pennsylvania: “Will Randolph Scott /
William Boyd save the fair maiden from the fierce Comanche?” “Will the green Army Lt.
realize that his scouts are leading him to an ambush before it’s too late?” und so weiter.
They tell you at the outset, of course, that suppression of white blood cells is one of
the common side effects of chemo, and even that, in a minority of cases (∼10 percent)
hospitalization to administer i.v. antibiotics post-infection occurs. Which doesn’t lead
one to suspect that the first dose of taxotere will plunge one’s neutrophil count from
an adequate 3800/cc to the low 700s, and stay there for two weeks while you are living
with “neutrophil precautions”: avoid crowds and/or wear a mask, no air travel (crowds +
enclosed space + death-bearing fellow passengers), take your temperature twice a day
to watch for infections, scrub everything with soap and water 24/7, and, oh yes, no gar-
dening (plants + molds + woe is you). Still, this week’s episode ends with our hero’s
neutrophils restored to respectability [wow, some bone marrow, eh!], just in time for
Tuesday’s scheduled dose 2 of treatment. Will our hero’s neutrophils again plunge down-
ward? ‘Dunno, we’ll have a better idea after this round of treatment whether this was
a characteristic or idiosyncratic response. Doesn’t usually happen in chemotherapy-naïve
patients but everyone’s different.’ Which is coming to be the mantra of contemporary
medicine, along with ‘we’ll see.’ Tune in next week for the next installment of our thrill-
ing saga.
Of course, life isn’t quite so medically defined. Restored neutrophils means I got
to hear 3 generations of McComiskey’s last night [Billy, Sean, Michael] on the button
6 75
accordion, along with a rocking band—two accordions, two fiddles, two flutes, banjo,
drummer, and pianist—which is trying to raise money for their trip to Ireland to compete
in the 2009 Fleadh in Tullamore. Maybe it’s three fiddles—Rosie Shipley will join them
over in Ireland, where she is already. The turnout was not extraordinary—money is tight
in Baltimore at the moment. Ordinarily, between uncles, aunts, cousins and camp fol-
lowers, these folks would have a full house. There’s a benefit Sunday at J Patrick’s pub,
which apparently has been suffering poor business this year. These are unusually accom-
plished musicians, but I doubt any of the younger generation who do the traveling musi-
cian bit can actually live off it. The drummer, for one, has a day job in the U.S. Army.
According to today’s NY Times, the bioethicist Daniel Callahan did time in the hospi-
tal earlier this summer with heart surgery. No, he reported, he did not comparison shop
when his chest pains started, but headed out to the medical center his cardiologist
directed him to. He did spend much time musing on the irrationalities of contemporary
health care delivery and health care reform, once he came out of anesthesia. Moi aussi,
Dan—been doing that a lot lately. Meanwhile, Obama’s having a hard time making his
case in Wyoming and Colorado (and apparently on Capitol Hill); it’s once again remark-
able how quickly the issue turns to ‘what will I lose’ whenever health care reform achieves
serious legislative momentum. Though it is clear that at least some of the dis-ease with
the current plan has to do with a general sentiment that Obama has already mortgaged
the farm, what with the bank bailout and other parts of the stimulus package, the Afghan-
istan initiative, and the like. At this point, even Obama seems on the defensive, spending
more time telling people what he will not do (‘no, Virginia, there are no death panels’)
than outlining what he is doing/will do. This is in part a function of the political dynamic,
and in part a function of Obama’s handling of the reform initiative. At this point, it’s hard
to imagine him talking seriously about managing care and resource allocation, given the
anxieties already out there about these issues. Which leaves him with no plausible way
to pay for health care reform. The other news which struck me were the several thousand
people showing up for free medical and dental care in LA. The care was provided by an
outfit which formerly delivered services to underserved rural populations—Navajo shep-
herds in the Nevada mountains?—but which has found its hands full in LA. Somehow,
this story, which should speak for itself, has no purchase. I find it far more compelling
than the Nation’s story about the woman whose insurer denied coverage for a cancer
treatment that seeks out tumor cells “like a smart bomb.” Uh huh. What’s the data on
that one, I wonder.
Enough about health care! Two cover stories this week about my former colleague
Ashraf Ghani, who is running for President of Afghanistan. An anthropologist and
former World Bank staffer, Ghani long ago sketched out some of the smartest ideas I’ve
heard about rescuing the Afghani economy—by getting access to European flower mar-
kets and the like. Apparently, the Dutch and German flower markets are one of the
few outlets for crops as profitable as opium. The EU did not welcome this proposal with
open arms. Anyway, the Times has been following AG’s campaign admiringly. I know
67 6 • HARRY M. MARKS
what they mean: the man is a hero, and it is quite remarkable that he hasn’t been simply
assassinated by some faction or other in the years since he returned home to work
for reform. The Times doesn’t quite manage to come out and say that the only way for
AG to get elected is to give a vote in the Afghanistan presidential elections to the Upper
West Side.
18 A U G U S T 2 0 0 9
NOTES FROM THE MEDICAL FRONT LINES: THE BATTLE FOR HARRY’S BODY
In the waiting room. Three women. Cancer veterans. All have been through several suc-
cessful treatments, two have metastatic disease, one has leukemia—all the aftermaths of
previous cancers/treatments.
They exchange information about treatments, stories about their doctors, their care-
seeking, their information seeking, their negotiations of cancer treatment, work, family.
All existentialists, of the ‘They Drive By Night’ sort, even the one with the Holy Bible in
her lap, a white woman from somewhere around York, PA, with her adopted African-
American daughter, a pre-teen. The second drives up each day from northern Virginia,
then drives home and goes to night work. She shares her story of ‘taxotere’ with the
woman who is just beginning a round of ‘taxotere’ for her disseminated cancer: “It was
hard on me, very hard, taxotere, but it did knock the cancer way back.” (Hurrah for my
drug, say I silently.) Her work is connected to drug development, somehow, and she is
the most knowledgeable of the three, but they are all supportive of one another’s choices,
whatever they have been. Like the doctors, they invoke the mantra of individuality to tell
their stories, past, present and future. The premises of individuality are distinctive, from
biological idiosyncrasy to the Lord’s hand, but the premise is explicit. Pennsylvania tells
a funny story about firing her doctor in York after she had to call him at home to convince
him that she had developed pneumonia during a episode of neutropenia [that low white
blood cell thing], and needed to be treated now! Soon thereafter she switched to the
Hopkins hematologist who had been consulting on her case. But no judgments, even
when she cops to working with a neutrophil count of 300 (but she won’t tell her current
doctors that). Virginia’s in a clinical trial, having run out of all the other tricks in the
medical bag. They exchange notes—treatments they’ve tried, treatments they’ve heard
about, treatments they can’t have for one reason or another. Dragon ladies, if you ask me,
keeping grounded through all this—fierce women, though you wouldn’t know it outside
of this peculiar context or possibly their own closest of friends. Men don’t have this abil-
ity, this reach, at least not outside of bars or poetry, which is a silent art. Bonding, sharing,
not judging, as effortlessly as an Olympic skier coursing down the Grand Slalom. And
even more impressive.
Toad goes for a ride. I finally get to go in back, after several hours of waiting: it’s usu-
ally bloods first, and then the chemo is ordered, and then you are invited back. Even
though Friday’s bloods are good for me, I am still waiting a fair bit. “Go back and find a
CHEMONOTES • 6 77
chair,” says Jenny (‘my’ oncology nurse), so I ramble round the treatment room and find
one on a cubbyhole along the wall. Everyone’s having problems today, with their ports,
with their blood chemistry, and with I don’t know what. So I’m sitting a good deal longer
in the treatment area, trying to read Tony Grafton on Kepler and chronohistory. One or
two techs wander by, wondering what I’m doing in a chair, reading a book w/o an IV
hooked up. Hopkins is supposed to validate my DNR orders today; I have drawn up the
paperwork, but no one seems to know who has to witness it: a doctor? an attending? a
social worker? So the line goes in, w/o that business. Times a wasting. First the steroids
and the anti-nausea drug, then the taxotere. Last time, they were very cautious, running
it very slowly and only increasing the flow after an hour or so of drip, drip. This time we
start at the normal rate. About 10–15 minutes in I give a cough and feel warm all around
my face and head. I mean warm! Past blush, past the warmth of the dye they use in the
CT scan to ‘whoa, who turned on the stove!’ warm. Instantly, I am surrounded: Jenny
disconnects the drip from the line, another nurse holds up an O2 mask for me, someone
else hooks me up to the BP machine and puts an O2 sensor on my finger, another nurse
runs back to the duty station and grabs 50 cc of benadryl, which Jenny jams into the line.
‘First time on taxo?’ asks the senior nurse. ‘No, second,’ says Jenny. ‘Huh,’ says the first
in a Mandy Patinkin sort of way (sorry, the iPod insists on putting on the original Broad-
way cast CD of Sweeney Todd.)
Benadryl is your friend: the heat leaves, we didn’t really get to airway constriction
though Jenny insists on referring to a coughing ‘fit’ but I won’t argue the call, and I sink
into the somnolence of 50 cc IV benadryl, which feels a lot like a post adrenalin rush
minus the cold sweats. After a while, and after checking the BP again at my insistence
(I don’t feel normal but I am), she starts up the rest of the taxo at a slow drip and ramps
it up over the remaining 45 minutes and the end of the bag. ‘So, I could refer to that as
“drug reaction” if asked?’ ‘Yeah, happens sometimes—we’ll give you a 20 cc of benadryl
next time before the chemo. And I need to do some research on this DNR so I’ll call you
about it.’
Whew, benadryl is your friend, but by the time I walk back to the office, am ready to
pack up and go home where I crawl into bed. Ugh, already the chemo fatigue, I think.
But it is just the remnants of the anti-histamine working their way through my tissues,
and at 5 pm I’m up and peckish, due to the steroids. It’s going to be a while before I am
ready to bid good night to ‘the close and holy darkness,’ and call it a day. Meanwhile, I
thought I’d write up the story of The Women, and Toad’s Exciting Ride.
What to say about all this, beyond the obvious? Cancer treatment is now biological,
we say, but it operates in the biological short term as well as the middle term. Middle
term: (a) taxotere kills white cells, and (b) hopefully cancer cells as well. Long term the
cumulative effects of (b). But the IV bags holding the treatment become an extension
of my body, and when the taxotere starts circulating, my histamines go on alert, produc-
ing a reaction. Now of course, my histamines have learned to recognize taxotere mole-
cules, so next time a reaction can be expected. So we add an anti-histamine to the bodily
67 8 • HARRY M. MARKS
mix at the outset. What kind of extended bodies are these, anyway, Prof. Haraway, Löwy,
Latour?
21 A U G U S T 2 0 0 9
The rhythms of chemotherapy are harder to catch. Radiation was straightforward—in the
long walk each afternoon through the length of the hospital to the southwest corner,
chugging a bottle of water; down to the basement, find a free changing room, get into a
hospital johny, and join the boys in the waiting area outside our room. Monday–Friday,
same time, with occasional interruptions (machine problems, problems with the radiation
safety door). Then up on the table, aim, fire, and back down the hall to a toilet (all that
water!), dress, and head back to work. Chemo has its rhythms—bloods, wait, treatment—
day 1–2 up from the steroid boost, day 3–x down from chemo fatigue and chemo head—
but they are harder to catch. Tuesday night’s wipeout was from the IV benadryl, not the
chemo, whose effects surfaced Thursday.
30 A U G U S T 2 0 0 9
DEATH PANELS? YA GOTTA BE KIDDING. LET ME TELL YOU A STORY . . .
For a long time, I have known that I do not want an extended, medicalized death, and
also that it is not so easy to avoid, once one starts the medical grand slalom. On the other
hand, when it comes to life decisions, I am a devout procrastinator. Still . . . after three
years I finally got around to composing a set of DNR and advance directives, listing all
the things my medical caregivers were forbidden to do. I brought it with me to the second
chemotherapy—the one with the unexpected anaphylaxis adventure—but no one around
knew exactly what to do to get my paper legitimated. I brought it back on Friday, and after
a consult with Jenny—‘We need to get a nurse practitioner to go over this with you—why
don’t you hang out over there?’ ‘There’ being the waiting area for families of patients who
are getting their ports checked. Forty-five minutes later she came back apologetically—
‘well, it’s actually the social workers who handle these, and I’ve called downstairs and
she’s waiting for you.’ Downstairs, no social worker in. I sit down to read their version
of the advance directives, drafted by the state’s Attorney General, and heavily geared
toward people who already know they’re terminal, medico-officially speaking. (Having
taken basic logic, ‘All humans are mortal’; ‘Harry is a human’; ‘Harry is mortal,’ I have
long been in advance of the bureaucrats and lawyers on this one: ‘we are all terminal’).
Anyway, the social worker arrives and I express my desire to use my own drafting.
Well, she’s not sure about that and has to ‘consult’ a colleague. Meanwhile, I go back to
my office, and modify the document slightly, having picked up from their forms that
I need to waive my HIPPA rights for Christine, my decision-maker designate, plus
give her a few other rights, like being allowed to stay at my bedside, discharging me
from hospital, etc. Shortly after, the social worker calls, and I make the trek from office
CHEMONOTES • 6 79
through hospital to her office, where she again has to be paged. We get the document
signed and witnessed, after three weeks and the better part of my morning. ‘Now,’ I ask,
‘is this valid throughout Hopkins—cancer center, hospital, etc.?’ ‘Yes.’ ‘And what if I am
picked up by EMS & an ambulance?’ ‘Well, you have to give them a copy, so you have to
carry it with you at all times.’ ‘What if I have an epileptic fit on the sidewalk and can’t
communicate? Is there a bracelet I can wear, like an organ donor or a hemophiliac?’ ‘Well,
no, not so far as I know.’
The penny finally drops: this elaborate medico-legal charade is mainly designed to
provide legal protection to specific medical institutions, rather than to the rights of
patient-citizens to have their desires regarding medical treatment carried out. Your rights
in this regard extend only to the sidewalk which designates the legal boundaries of
institutional liability. So, if you’re like me, and averse to medicalized deaths (or medically
extended life), always travel with a certified copy of your advance directives, in a pack
of friends (ideally including a lawyer), and be sure your medical surrogate is available
24/7, and that you have given her/him rights under HIPPA that will allow your EMS/
resident/physician to talk to her/him about your medical condition. Oh, and if you
cross any state borders, make sure your advance directives meet local legal guidelines.
Death panels? Ya godda be kidding (What’s the ASCII code to symbolize a deep,
contemptuous snort?)
Well, the neutrophils dropped back down, a little further this time to 600. I’ll bet you
think that’s got me worried. No, what has me worried (today) is that I haven’t yet received
a statement from Blue Cross regarding my first chemotherapy at the end of July. There
are many reasons, including the crumbling Hopkins infrastructure, why this claim
might not have been processed as yet, but I won’t rest easy ‘til I know for sure that BC is
going to cover this w/o a fight. They should—my understanding is that the drug is FDA
approved for this indication, which is more than can be said for some of the other treat-
ments I’ve gotten, and that this is now a recommended course after treatment failure
with various forms of hormone antagonists (‘check’), for prostate cancer patients with
radiologically-certified bone metastases (‘check’). The treatment is even validated by a
pretty good RCT! Still, I keep looking for that statement in the mail. Unoriginal thought
for the day, with apologies to Diderot and Marx, and, I suspect, also the Situationists: “La
justice ne arrivera pas avant que le dernier bureaucrat serait étranguleé dans les entrailles
de le dernier advocat.”
Some of you may be wondering about my bureaucrat-lawyer paranoia (DSM 900.??).
It seems that I approach these encounters with the well-honed reflexes of someone who
did battle with Selective Service for three + years. Thank you, Lewis Hershey, and above
all, Leonard Jaffe, my American-Friends-Service-Committee–trained advocate and coun-
selor in the jujitsu of the law. It’s true, you never forget how to ride a bike (or to anticipate
the way the tracks of bureaucractic mètis run). Some of us, apparently, have antibodies
which fly into motion at the first whiff of a bureaucratic/legal antigen, with all the effi-
ciency and force of our molecular antibodies. Take a memo, Herr Professor Marks.
68 0 • HARRY M. MARKS
31 A U G U S T 2 0 0 9
THE DNR STORY: CORRECTIONS AND A PARTIAL RECANTATION BUT NOT MUCH
So, one of my medical friends points out that everything I was told Friday last about non-
portable DNRs is bullshit, and sure enough, she’s right. There is a Maryland law covering
this, and if you and your doctor fill out the right forms, there is a bracelet you can get to
wear. Apparently, however, no one I spoke to at the Kimmel Center, JHMI was aware of
this. Knowing me, you will not be surprised to hear that they are now! But the question
remains, if a law is on the statute books, but no one affected by it knows about it, what
exactly shall we say about the rights granted by the law? Some of you may say that if I had
only looked on the web in the first place, I would have found out about this already. I,
however, thought I had a doctor–patient relationship in which the institution took care
of those gaps in knowledge which must befall even the most omniscient caregiver. You’d
think that, given all I know about institutional memory and organizations, I’d know bet-
ter, wouldn’t you?
OK, I’m still learning about all this. Apparently, if your physician signs the Maryland
form, it is binding on all health care providers in Maryland (if they know about the law).
And there is an outfit in California (medicalert.org) which will provide you with a brace-
let, containing the Maryland medico-legal language, once you provide them with a copy
of the Maryland forms and $50+ (annual renewal ~$25). But apparently, the validity of
these instructions ends when I go up to Shrewsbury (PA) for prime rib, or down to DC
for some kulchah (or Belgian frites). So consider this only a partial recantation of my
analysis on Friday. To wit, an exchange with the head of social services, which was alter-
nately apologetic and institutionally defensive. Apparently, advance directives and the
like remain something for ‘you and your physician’ to decide on, and it appears as it is
up to your physician to initiate this discussion when he/she deems it necessary. (Or you,
if you are a particularly uppity patient.)
To summarize the lesson so far: yes, you have rights, but not everyone is aware of
these. Yes, you have rights but only in certain legal jurisdictions. And the organization’s
interest remains, for the most part, more in covering its medico-legal tush than in mak-
ing you fully aware of these rights. Given that our culture remains profoundly embar-
rassed (ashamed?) about death, not all that surprising. Thank goodness I have a very
menschlich physician who needed neither explanation nor persuasion in order to sign
the papers. I just have to find him tomorrow . . .
11 S E P T E M B E R 2 0 0 9
Where to begin? With a non-medical event, time spent in the waiting room, mostly trying
to proof-read an article and some Tony Grafton essays, but being distracted by the show
on the wide-screen TV. CNN is broadcasting an image of the Potomac River outside of
Washington, where apparently the Coast Guard intercepted a boat that had transgressed
CHEMONOTES • 6 81
the river’s security boundaries, lobbing a few rounds at it and forcing it to shore. That
image, and various puerile commentaries on it (9/11, what was the boat doing there, who
was on it?) occupy the screen for a full half-hour. Warhol’s ‘Sleep’ had more dramatic
tension.
It then emerges from various sources that this was a training exercise, at which point
the CNN worm turns. We get a series of commentators (a) excoriating The Government
(aka the Coast Guard) for running a training exercise anywhere near the Pentagon on
9/11 and (b) for failing to inform the press offices at Homeland Security and the Coast
Guard that it was a training exercise so they could inform CNN news managers!1 The
volte-face was astonishing; La société du spectacle indeed! Do you think I ought to tell
them that running CNN in the clinic is bad for the mental health of some of their
patients, and for the blood-pressure of others?
And now on to our medical soap opera segment.
Every cycle, as I say, a surprise. Chemotherapy is, for a medical treatment, meticu-
lously planned—far more so than most. Still, it is full of contingencies—patients whose
white cell or red cell counts are not up to snuff, and who must cancel; weeks (like this
one) in which five days worth of treatments must be crammed into four. Herewith today’s
tale of contingencies.
I get to the Kimmel Center a little before 8, having enjoyed a good hi-cholesterol
breakfast at Jimmy’s in Fell’s Point. I’m the second one to get their bloods drawn, and
while my veins are especially fussy today, I am upstairs in the chemo waiting area by
8:20. The nurses are in their Friday meeting, so I have a sit-down and start correcting
some proofs that arrived yesterday. 9:00; 9:30 . . . I hunt up Jenny and she says the blood
results are ‘good to go’ and the chemo is ordered. (They will not fill the Rx for the drug
until they know it will be used.) ‘An hour, maybe less,’ says Jenny, and ‘we’ll start the pre-
medication.’ 10:00; 10:10; 10:18; 10:30; 10:55; 11:15 . . . It’s 11:50 before I go back.
‘We’re short on spaces today—no chairs, no window beds. We’ll put you in this room.’
‘Hmm,’ says I, ‘and if I have another reaction? I’m not in anyone’s line of sight.’
‘Don’t worry, I’ll check you often.’
Well, I’m up on the bed and waiting for someone to come put the line in. Open door
gets closed by someone passing by and I’m sequestered. 12:00; 12:10 . . . . Jenny pops in
a couple of times:
‘They haven’t put the line in?’
‘Nope.’
About 12:20, we are rolling. The first time the pump beeps, it turns out that it’s run
out of battery power. I get down from the gurney/bed, grab the IV pole, negotiate my way
out of the room—think of a water ballet with a particularly inept hippo in the back room
of a furniture store—and find Jenny, who plugs the machine in. The next time, I’ve got
to reach around under the bed and behind with my free hand to unplug the pump, then
grab the IV, negotiate it out of the room . . . Jenny?! The third time I become assertive:
‘I don’t think this is working.’ The Miracle Worker finds me a chair.
68 2 • HARRY M. MARKS
Because of a strong histamine reaction to the drug last time, I have been pre-medi-
cated with benadryl and something else to tamp down the reaction. The taxotere is roll-
ing in, and Jenny comes by to take a log of recent medical events. We are chatting when
I start coughing and getting flush. Not so bad this time. No oxygen, just an IV drug (not
benadryl) and a sensor on my finger and a BP cuff. Two nurses, not six. IV drug works
like a charm; histamines be gone. We wait 20 minutes and start taxotere again, running
it in a little more slowly. I am running slow myself by this point. Have eaten my two
hard-boiled eggs, and a couple of packs of Oreos from the pantry, and have just about
finished Grafton’s latest (I think) book of essays. (Next time I will pack for an overnight
trip: ‘fall camping is winter camping.’) But all these drugs to potentiate and neutralize
histamines have neutralized me as well, and I drift off to sleep for several short naps.
Around 2:50 I awake. The drug bag is almost, but not quite, done; my bladder is almost
but not quite overflowing. Stop the pump again? Wait it out? Stop? Wait? You know me,
never call attention to oneself. The drug finishes, I grab a nurse to turn it off and head
for the bathroom. Ah, life is sweet.
Since I spend some time each month in a chemo treatment suite, I have been musing
about the organization of chemo work and hospital space. To begin with, architecture.
There are four-five adjacent suites laid out in an incomplete hexagon. There is an interior
corridor which connects all the suites, allowing patients and staff to get from one to
another if there is no direct passage, as there is for some adjacent suites. Important for
the ‘circulating’ nurses who perform functions in more than one suite, and convenient
for staff and even patients, once they figure out the layout. I am still sorting it out but
almost have a map in my head. Still, it’s confusing. The central waiting room has three
doors, all of which lead to different parts of the interior hexagon, but connected by the
interior corridor! Wish I had a CAD program or knew how to use one but you’ll have to
go with inferior verbiage.
Anyway—forget the hexagon. What I have to say is about my suite. At one edge of the
suite is the nurses station. There are beds along the two far walls, and in the middle, an
office partion allowing for 4–5 stations with chairs, for those of us who prefer to sit up. The
nurses have a direct view of maybe 50–65% of the patients; for the rest of us, they have to
come around to our side of the room to check us out. The layout is not as bad as it sounds—
there is usually some staff person within eyeshot, and all within hearing (except in the
closed room where I started yesterday). Just yell ‘I can’t breathe.’ And the layout is used
intelligently. My first time out, I had a window bed so Jenny could keep an eye out. You
heard about yesterday—my good fortune that Jenny was chatting with me when I started
to react to the drugs. Still response time is remarkable—especially in the last session with
the more severe reaction. The nurses and staff are well attuned to crisis events and don’t
miss a beat. So the space works well, the lack of X-ray vision notwithstanding.
CHEMONOTES • 6 83
OR. Once upon a time, I was an aficionado of operations research and queuing theory.
These are the methods by which engineers mathematically plan highways which are
going to be heavily used twice a day, and near-empty at 2 in the morning. And airplane
scheduling, and ‘just in time’ inventory and . . . hospital capacity. As you read earlier
today, there are practical limits to OR. Units planned for five-day use are a bit pressed
during four-day holiday weeks, even if not everyone reschedules their missed day for the
same week. Bio-medical events intervene unpredictably: the patient who stays longer
because he/she needs a pre-chemo transfusion that day, or the one whose chemo gets
slowed down because of an anaphylactic reaction.
There is probably a hierarchy of predictability: in-patient units (but not ICUs/CCUs/
NICUs), operating room suites (ORs), emergency rooms, MASH units. Chemo units
must be well below emergency rooms but certainly above in-patient units and possibly
ORs. But this is a social process as well as a mathematical one: I am reminded of the
heart-vascular surgeons who stomped out of a Town Meeting with our Dean whining
because they had been having to turn away patients from Arizona—and for all I know,
the United Arab Emirates—because of a shortage of intensive care beds to cover their
patients post-surgically. Well, probably they managed to fit the UAE folks in . . .
So, I must, if I ever get to talk with her on a non-busy day (hah), ask Jenny what input
they had into the design of the suites, and how they work/don’t work for them. Other
ethnographic inquiries I should pursue, dear readers?
6 OCTOBER 2009
DOLLARS AND NON-SENSE
Some time ago, you may remember, I was getting anxious: I had not heard from Blue
Cross about reimbursement for my initial (and subsequent) chemotherapy. Well, the
claims did go through, though it took them longer to pay than usual, as well as it might.
By the time I had heard from Blue Cross about the first treatment, I had run up$11,753.16
in charges for the first two treatments, plus an additional $9,744.08 for the first use of
a radioactive drug used to tamp down bone pain (and maybe also reduce disease progres-
sion): total $21,497.24. It’s a good thing they paid; I don’t seem to have $21,000 lying
around anywhere. No reason—other than the delay—to think they wouldn’t cover the
treatment, which is FDA approved for the indication—the chemo (taxotere) at any rate.
The radioactive drug (samarium) is being given off-label. And you wonder how people’s
medical bills mount up here.
So, let’s see: 10 treatments at more or less $5,800 per treatment, that’s $58,000. We
won’t count the small change of weekly blood tests, any possible hospitalizations for
infections or other complications in my future, or even the ancillary samarium—which
I will get three times, I think—for another $29,000. Actuarily, that $58,000 buys one
3–4 months additional life, though one hopes for more in this particular case. What’s it
worth to you, fella?
68 4 • HARRY M. MARKS
What’s it all for—I ask not existentially but as an accountant (or the Congressional
Budget Office) might. Well, that’s a bit of a state—or rather a non–state—secret. A few
years ago, my insurer decided to stop telling its customers what exactly it was paying for.
Used to be, the ‘Explanation of Benefits’ would say ‘amputation—right leg’ or something
like that. Now it’s just ‘Hospital services.’ If you want to know what they are paying for,
you have to file a written ‘privacy waiver’ each time. Why? Again a mystery: they are
apparently protecting my ‘privacy’—not to mind that the clerk I call at the 800 number
can see exactly what I have been charged for. I can’t, without I make a written request.
I’ve been around the ropes on this one a couple of times already with Blue Cross, and
short of writing the Insurance Commissioner of Maryland, have given up on a coherent
and believable account of the policy. I have been thrown various lines, which in turn are
in the scripts they give their phone operators, and none of which has any basis in law (or
possibly even reality). Still, I’ve learned the drill: file a written request and you get a certi-
fied letter—trip to the post office required—detailing the charges for a specific visit.
Yesterday, the statement for my initial treatments (7/23 and 8/18) arrived, and it was a
little less than forthcoming. As I expected, the lion’s share of the bill was for the chemo-
therapy ($5,194.80 of 5,799.28)—the rest for tubing, supplies and a mysterious $0.20
for some additional drug. I would tell you more, honestly I would, but here is where the
system breaks down. I assume that the $5,194.80 is for taxotere, but what it says on the
detailed, custom-made, at your special request “summary of services” is “Y6360—Drugs
requiring detailed coding.” I assume that would be the taxotere rather than, say, the saline
or dextrose solutions they give you with the drug, but who knows. Blue Cross obviously
is not telling.
What is it about taxotere that makes it so expensive, you might be wondering?2 Hard
to say, but Willie Sutton might have some idea. Apparently, in Australia it goes for
$18,286 per treatment – depending on what the South Australia Sunday Mail means by
“treatment,” that is either a lot cheaper or a lot more expensive than Blue Cross allows.
In the UK it goes for £7,000—at the time (2006) around $14,000 or more. A lot less
than $58,000 (or $51,000 if you like), but then again, the UK NHS and the Australians
were not letting men have the drug for some time, given how little the drug offered the
men. That brought a series of preposterous but politically effective charges of gender
inequality—the drug is approved for breast cancer, but for that condition, it appears to
produce real remissions. Taxotere has been on the market since 1996 (for other neo-
plasms), and was approved for prostate cancer in 2004. I couldn’t sort out the patent
history, nor did I find anyone who did it for me. It’d make a nice study: drug companies
as rentiers, aka ‘monopoly rents.’ As I say, Willie Sutton would understand. It’s actually
a bit surprising how hard it is to find out how much the drug costs, much less why. I
suppose if one dug deeper than I did into the trade press, one could find out. Maybe.
Meanwhile, and until I reach the lifetime benefits cap on my insurance, all this costs
me is around $1,500 a year, which is the annual limit on my out-of-pocket costs. To all
those who have helped to underwrite my oncology treatments by paying their health
CHEMONOTES • 6 85
insurance premiums while staying (relatively) healthy, my profoundest thanks. To Sen.
Baucus and President Obama, my deepest contempt.
3 NOVEMBER 2009
ALICE’S ADVENTURES IN MEDICAL LAND: OF BIOLOGY, ECONOMICS,
AND SAMPLING FRAMES
6 DECEMBER 2009
THE COSSACKS ARE / ARE NOT / POSSIBLY MIGHT BE COMING.
WHO ARE THE COSSACKS, ANYWAY?
68 6 • HARRY M. MARKS
break, with my next treatment scheduled for January 5, 2010, my 63rd birthday (whoopee!).
Which should allow me to go up to New York for a few days of museum touring either
before or after Christmas (assuming we can find an affordable room at this late date).
Let’s hope so: my eyes are eager. (Anyone who wants to meet us at the Neue Gallerie or
the Moma Bauhaus show should book time now—we’re either going up the week before
or the week after Christmas.)
Doctor K and I also began discussing ‘what’s next?’ Friday’s treatment was cycle 7,
and we are going—I was corrected—for nine, not ten. They won’t be able to interpret the
scans used to evaluate the treatment until late in the Spring—April/May maybe. Mean-
while, he’s floated the notion of a phase 2 trial studying a monoclonal antibody meant to
unleash the immune system against the neoplastic (cancer) cells. Apart from the rela-
tively poor track record of monoclonals, the idea of an unleashed immune system doesn’t
strike me as a necessarily good idea, to say nothing of whatever monitoring costs go with
the study. But we’ll leave those negotiations to a reading of the protocol and January
discussions.
While I sort out treatment logistics and my spring-summer lebenswelt, the health care
reform (sic) process churns on in Congress. At this point, I figure the only ones paying
attention are the folks who are putting off needed care, and the many interested parties
whose economic and/or professional futures might be affected. Plus a few vicarious on-
lookers from the left and the right, outraged or motivated (as you like) by the exclusion
of abortion coverage or other maneuvers. I confess, I haven’t been paying much attention
to a 2,000+ page bill whose details change daily. Like most of the country, I am waiting
to see what we end up with, after the Senate, the Senate–House negotiations, and the
final bill’s details—if there is such a thing as a final bill. Still, I confess that I was par-
ticularly irritated at the latest Democratic scam—to raise money for the bill by cutting
back on home health care benefits under Medicare. Granted, there’s a lot about Medicare
that needs fixing, and not very much in the bill to do so—some promissary notes in the
form of another Commission to look for Medicare savings. Still, a measure which will
reduce the immediate fiscal cost of the bill while almost certainly raising the real costs
down the road—all those individuals who will now end up with more hospital and nurs-
ing home stays—strikes me as a particularly cynical maneuver. The sort of thing one
expects from the other party when they are in charge. I might actually get off my duff and
write my Senators and Representative, for all the good that will do. OK, loves, its back to
my day job—reading, teaching and managing my doctors. Happy Holidays to all and a
very Happy New Year.
8 J A N U A RY 2 0 1 0
RADIO FREE HARRY SIGNING OFF
For the most part, contemporary medicine (physicians, practices, routines) is aimed at
mastering, or at the very least managing disease. Sometimes they rise to the occasion
CHEMONOTES • 6 87
and focus on controlling treatment. Visited my oncologist on Tuesday, and by the end of
the visit he had decided that Tuesday’s chemotherapy (# 8) would be my last, at least for
a while. A combination of patient factors—I strongly articulated my desire to avoid
medical dependence as long as possible—and biology—the treatment has been hitting
my red cells hard of late, and apparently there is an outside chance of additional treatment
producing bone marrow failure which at this point would be, as they say, counterproduc-
tive. So, I am currently negotiating the iatrogenic effects of Tuesday’s treatment; the
nurses and I are a bit triste about my imminent disappearance from their weekly life.
They’ll get over it but what will I do on Fridays once the monitoring for the current round
of treatment ends? So much of my life since July has been structured by the cycles of
treatment, monitoring and restricted activity that it’s a bit hard to accept.
Apart from the suddenness with which the script was rewritten, there is the delightful
prospect of a temporarily chemo-free life. To judge from my brief experiences after
Christmas—ten extra, blissful, restorative days of non-toxicity—that’s going to be won-
derful, once it comes. In terms of prognosis, it’s a watching brief at this point: monthly
clinic visits, reporting in if any symptoms appear, and waiting ‘til late spring to do bone
scans and assess the impact of taxotere plus samarium more definitively—bone lesions
(more/bigger; lesions—static; lesions diminished in size and number. Check one). And
figuring out the best (most pleasure-producing) use of my time over the next 4–5 months,
or the parts of it not already committed to various university and professional activities.
So do not expect any future bulletins in the short term; will keep you all apprised if some-
thing exceptionally good or bad happens. And thanks so much for all your responses to
my musings and experiences of the past six months.
22 JUNE 2010
On the one hand, I haven’t been sending out any ‘chemonotes’ for a while. On the
other hand, I find the existential aspects of (my) disease boring, and I haven’t had
much to say. On the third, or gripping hand, to invoke the sci-fi author Larry Niven, send-
ing out a collective bulletin is more efficient—there is a reason for the press briefing,
after all.
So. Where we are/have been. Chemo ended in January, and it took a while before they
were willing to order new bone scans (which are hard to interpret in the few months
following chemo). And for the most part, though the biomarkers (PSA) continued to rise,
I was holding my own through the spring, in terms of activity, weight, etc.
But fatigue—related to disease and not treatment—has been recurring at intervals
this spring, and we are now in the end zones of symptom management, having left the
City of Medical Hope, even though I had to drag my oncologist out of there. So, steroids
and other tricks to deal with fatigue, and the promise of other tricks to deal with other
manifestations of disease (e.g., anemia, bone pain, and other zones of disease progres-
sion we have yet to visit).
68 8 • HARRY M. MARKS
2 5 J U LY 2 0 1 0
CHEMONOTES • 6 89
efforts to escape the pain. I was taking oxy only at the extended intervals (4–5 hours) sug-
gested on the bottle, but did not then realize how imprudent or ill-advised that was. One
needs to be more experienced in using this drug before one can use it intelligently. By
Sunday night, I had discontinued it but the damage was done ; my intestines were locked
up like quick drying cement.
The events of the ensuing week are narratively complex; for my purposes here, I focus
on the psycho-physical effects of the muscles. You all, presumably, have strained one
time or another to force a bowel movement, using the muscles of the lower back and
abdomen to aid the gut. Well, sure. Something else happens, I think, when the intestines
are frozen solid—each attempt to initiate or aid peristalsis simply frustrates the back
muscles which then start radiating contractions and pain up and down the back. At least
in my case. The harm in all this is not the pain (which is not so bad and which I ulti-
mately figure out how to distinguish and manage). Rather, it is the subjective sense, early
on in the week, that this is now the beginning of cancer’s end—I lack either the strength
or the will to get out of my low-lying Ikea bed unassisted. I spend lots of time flopping
around like a turtle, trying to figure out a strategy for rising. Rina, in the early days, must
come to the ring of the phone to help me out; I do my ablutions or drink or meds or
whatever, then sink back into a semi-dozing state where, initially, all I can do is obsess
unendingly about this blog and about all the undone things I meant to do to get the
house, finances, and job-things in order. Given that I cannot put two thoughts together,
that would be a trick. And weakness, moral or physical, aside, a glimpse at the various
unhealing bruises on my arms does not encourage thoughts of continued vitality.
I spend much of Monday at the Kimmel center, where Nurse J and Oncologist K have
written me into an already overbooked schedule. Along with an IV dose of steroids,
which is revivifying, J works a plan for the constipation. As with all else this weekend I
am clueless—Rina has been helping me out of bed, driving me to the Kimmel center (I
feel as if I can’t possibly make the walk from my end of campus to theirs, which I have
been doing all along these last four years), keeping track of what is said.
The Kimmel philosophy, or Dr. K’s, with regard to laxatives is incremental, properly
conservative—you can do as much harm as good by starting out aggressively, losing lots
of fluids, producing electrolyte imbalances, and so on. All this is left unsaid, but I endorse
the principle—primum no nocere. Start Monday and continue Tuesday with OTC laxa-
tive # 1; Wednesday start the next more powerful OTC remedy. By now I can aid this by
consuming melon, grape juice, and trying some bran, although none of it in amounts to
keep a sparrow alive over the long run. I am a bit less dozy but still exhausted: nothing
like deep or uninterrupted sleep since before the weekend. Dozing most of the day, I am
hardly inclined to sleep through the night anyway. Coping with the muscular tension and
pain calls for activity (heating pad, intensely hot showers, tylenol), which must be done
immediately to have an effect. I’m not sure how much sleep I get overall since the week-
end, but even with the emotional/cognitive effects under some control, I am pretty
insane with sleep deprivation.
1) All along, my concern has been avoiding some medical intervention which ends up
leaving me not in control of events. And here the problem ends up being constipation!,
caused by an imprudent, injudicious use of oxycontin which I initiated. Adding irony to
injury, my only bowel concern for the last four years has been handling those occasional
episodes where my bowels are intensely ready to unload, where my control of the last
4–5 inches of the colon is not what it used to be, and where I am struggling between
cramps and embarrassment while I try to make it to a toilet. It’s happened infrequently
enough, but still, go figure.
2) To paraphrase Philip Larkin, ‘they f--- you up, your soma and psyche.’ Everything I
wrote here is probably generally true, but it’s true that my psyche has had more practice
than some in rewiring the emotional–somatic connection.
3) To return to the beginning, we don’t think much more about the more superficial
wiring of the muscles and the gut—at least not off the post-surgical floors. Our attention
is on the molecular pathways which lead to the production/reproduction of disease.
Perhaps it is not only our concepts of disease which are occasionally layered with multi-
ple archeological layers, but that our bodies themselves operate at more levels than the
molecular. Trivial, I know, but seemingly very pertinent at the moment—sure am glad
that USP formulation of a laxative is still on shelf in the dispensary.
Anyway, folks, I’m (slowly) on the mend and might be back to something like normal,
importuning you all with more consequential missives beyond these latest reports from
the field. Eventually, anyway.
25 A U G U S T 2 0 1 0
UP AND DOWN; OR, “CAPTAIN KIRK, WE APPEAR TO BE IN SOME SORT OF STRANGE
E-SPACE; NONE OF OUR NAVIGATION EQUIPMENT SEEMS TO BE WORKING . . .”
As some of you know in more detail than you would like, this has been a rocky summer
for me. Over the past two weeks, I have been experiencing daily fatigue, impaired ability
to concentrate, work, or for that matter, on days like yesterday, to put one foot down
after the other. Despite feeling a bit ‘low energy’ over the weekend, I let things ride until
CHEMONOTES • 691
Tuesday AMs labs and appointment with the oncologist. By which time, I was seriously
anemic—RBC 2.27, Hemoglobin 7.2; platelets 36—for those of you for whom these
numbers have meaning. (For me, it was more the feeling of being a stumble-bum walk-
ing over the clinic.) Anyway, long story short, they gave me 3 units of red cells yesterday,
and today my nail beds and knuckles look as pink as when one goes for a long walk or
mild run in fall. (When I woke up and looked at my fingernails and knuckles, I thought
I had some strange version of roseola or scarlet fever.) Blood is your friend (though one’s
friends remain the true medicine in all this).
So . . . It appears most likely that the anemia and fatigue is a sign that the neoplasm is
beginning to consume/impair bone marrow. Transfusions are a sort of maintenance ther-
apy—wonderfully restorative but not therapeutic. Unlike my first transfusion, the effects of
the one before yesterday’s lasted only two weeks, by which time the anemia was far more
severe (lower values, etc.) than at any earlier point, and they upped the ‘dosage’ from two
units to three. As I have suggested to some of you already, we will be playing this phase out
improvisationally—depending on how long this transfusion lasts, they may try a reduced-
schedule version of the last drug I was on to see if that can slow down the neoplasm. So, we
are back in the terrain of medium / long-term certainty (no cures) and short-term uncer-
tainty, except that the time horizons for me are more like ‘will I feel this good at 3 pm?’ and
for them, ‘come in next Tuesday and we’ll check your blood count again.’ In terms of infor-
mation, I can’t give you better than this; as for me, I’ve got to go in and clean up the one-
handed typing/writing I did yesterday for my September 1 talk on the ‘lessons of Avandia.’
I am hoping to see some of you soon, and almost all of you October 30 at ‘harryfest’ but will
be under the radar for a while—as soon as ‘avandia’ and slides are finished, I’ve got to go
back to revising a paper for the Anthropology Department on ‘a historian’s vain quest for
social theory.’ And then, I promise, no more talks or papers for a while . . . Really, truly . . .
I am adapting—ordered the roller version of my L L Bean book bag yesterday, so me and
the second-graders will be schlepping our laptops, papers, and books on the sidewalk, rather
than on our backs, an effort for which I, on days like yesterday, no longer have the energy.
à la prochaine
2 4 –2 6 N O V E M B E R 2 0 1 0
ILLNESS NARRATIVES—HM AND THE ETHNOGRAPHERS
Those of you who have read earlier versions of my “chemonotes” know how much I
despise personal illness narratives, both in the general sense and more specific, the sort
of drivel Dana Paulson, an NYT writer, invites us to share about his “experiences” with
prostate cancer. Who cares, Dana, I have muttered, and certainly, who cares, Harry? Yet
it seems to me that the time has come to explore the personal.
But to begin with, the biological. As I understand it, given the failure of various stand-
ard therapies, we are now largely in a situation where the neo-plastic cells are destroying
not simply bone but bone marrow where the body makes blood cells. This produces
CHEMONOTES • 693
ability to intellectually focus on some problems has clearly improved since mid-
November. So, am I headed ‘down’ (short-term memory loss, need to use a cane and,
ideally, a minder to make sure I don’t fall; time–date disorientation) or ‘up’ (increased
ability to cognitive focus and also, apparently, less objective need for a cane to get
around)? Who knows? There are clearly illness trajectories at work (thanks, Anselm
Strauss and disciples), but how to interpret them is more difficult.
Yesterday, I am in for transfusions, but owing to some screw-ups, the appointment is not in
the system when I arrive at 7 am for the lab work, which means that it is noonish before the
transfusions get started and 3–4:30 pm before we are done. I give you this as background just
so you know this is a longish day in which both events and readings of these events emerge.
From 8-ish (a.m.) to noonish, I am in the oncology outpatient waiting room, whose
aisles are not really wide enough to accommodate two of the overly wide wheelchairs
some of the sicker patients (including me) are using. Space and bumps. I guess I have
gone through life with a clear sense of the physical space around me, and made every
effort to avoid collisions—the product, no doubt, of time spent in Manhattan weaving
and bobbing around tourists. Equally clear yesterday was that while some patients and
their minders are willing to engage (with eyes, steering, etc.), many people are just as
happy to bump into you and offer a “sorry” or not even that. Since I feel like glass that
could shatter at any moment, I do not take the second group (who outnumber the first)
kindly. They do not imagine the insides of the body of those we encounter in the waiting
room—maybe when the outside picture resembles the inside (skull damage, or even
baldness) but not in my case, where the inside vulnerabilities (bones painful to touch)
and interior imagining (glass shattering) are invisible.
Race, class, and the waiting room. There are a couple of working-class African-Amer-
ican women there with an infant around 12 months (my age sense re babies is no longer
precise)—the most objective sign of their social and economic status is the decision to
head off in search of a pay phone, as they have no other means (the ubiquitous cell
phones) of reaching the people they need to talk with. They return. The kid they are with
has some kind of bad cold and intermittent diaper needs, and it is protests (from the
child) about one or the other that force their attention on the child. Until . . . I play my
game with small ones. I open up my eyes and brow as wide as possible, and fix my face
in a grin (child developmental psych 101). The child cannot move her eyes away from
me—forgotten the poop, the head cold, etc.—her gaze is transfixed on Harry (they are
across the wheelchair aisle from me on a diagonal). Baby (not defined by race or class
yet) and I play the eye game, until eventually, one of the minders moves the angle of the
wheelchair so that babe and I cannot make eye contact. Gotcha whitey, honkie, or what-
ever the current vernacular fifty years out is for the likes of me.
Disability. Of course, the ‘disabled,’ marked by wheelchair or cane or the like are often
invisible. The streets around Hopkins medicine, especially near Monument and Wolfe,
NOTES
1. Implicit here, of course, is that CNN can only get their news from press offices rather
than investigating a non-story before running it. Streaming news = we get you the news before
it never happened.
2. To those of you who follow these sorts of things professionally (or avocationally) I should
say that the ‘drug cost’ may be entirely fictive. It’s hard to imagine that they are paying all
those nurses, phlebotomists and oncologists on the roughly $800 left once the drug cost
is covered.
CHEMONOTES • 695
39
THE EXPERIENCE OF DEATH
IN A DUTCH NURSING HOME
On Touching the Other
Roma Chatterji
Mw. Overbeek is admitted from home in the pre-terminal phase (pancreas kopra metasta-
sis operated last year). From this summer major deterioration, since two months largely
in bed. Has had home care—2 daughters involved—neighborhood nursing and project
terminal house care. The daughter chiefly responsible for coordinating home care has
developed a bad back. Mw. Overbeek looks thin and exhausted but is still in denial—“in
the bargaining phase.”1 She is clinging to life—has had several relapses when the family
felt she was going but her eyes are still alert. She seems to be exhibiting all the different
phases of mourning (see Kübler-Ross)—especially anger, depression and bargaining. She
has worked hard all her life—twice married, twice widowed, 4 children. Given her condi-
tion her time on earth should be short.
Cornelie Mous, 28 August 1986
This is an extract from the case file of a terminal patient who was admitted to the
verpleeghuis (nursing home) Regina Pacis, in Arnhem, the Netherlands, in the first month
of my fieldwork there.2 I had just begun as an “unofficial trainee,” attached to the social-
work section of the medical and paramedical department. Since the social worker medi-
ates all relations between the verpleeghuis and the wider society and performs a crucial
function in the admission and discharge of patients, it was felt that this would be the best
place for me to get a sense of the work culture of the institution and the kinds of patients
that it dealt with.3 In the weeks that followed I came to know Mw. Overbeek more inti-
mately since I was appointed as her bereavement counselor. (The Dutch title “Mw.,” an
696
abbreviation of the Dutch word mevrouw, corresponds to the English “Mrs.”) It was
through my interactions with her that I had my first introduction to death and dying in
the Netherlands and the ways in which professionals such as nurses and other medical
personnel relate to the dying process.
M E D I C A L I Z AT I O N A N D T H E DY I N G P R O C E S S
Despite the growing significance of the hospice movement in the United Kingdom and
the United States, at the time of my fieldwork in the mid-1980s, palliative care was rela-
tively undeveloped in the Netherlands (Jenssens, Ten Have, and Zylicz 1999). There were
few specialized hospices for the care of dying patients, so that institutions such as the
verpleeghuis that were primarily meant for the care and management of severe chronic
diseases in old age came to include some of the functions of a hospice by default. The
hospice movement, as is well known, dates back to the late sixties in the United Kingdom
and emerged out of a growing dissatisfaction with the impersonality of care given to dying
patients in hospital settings. The concern was to provide social spaces where the needs
of the dying and their families could be met and where patients could regain control of
the dying process. Cicely Saunders and Elisabeth Kübler-Ross became the leaders of the
“death with dignity” movement, as the hospice movement is popularly known. The pro-
ponents of the movement were also concerned with inadequate pain management in
terminal care. Patients were often left alone by the medical staff and had to endure con-
stant pain, or were so heavily drugged that they remained either unconscious or semi-
conscious until they died (Siebold 1992).4
In their pioneering work on the “dying trajectory” in hospital settings, Barney Glaser
and Anselm Strauss (1970, 1968, 1965) develop a powerful critique of the medicalization
of death, using detailed case studies to show the ambivalence of hospital staff toward
dying patients because of the unpredictability of the terminal trajectory and their inabil-
ity or unwillingness to give credence to their patients’ complaints of pain and the need
for its control. More recent studies on palliative care and euthanasia in the United King-
dom and the Netherlands (Lawton 2000; Pool 2000) have focused on conceptions of the
Western self through an analysis of dying patients and the negotiations around control
over the time of death. More specifically, Abraam de Swaan (1985) and Anne-Mei The
(1997, 1999) in the Netherlands have focused on cancer patients, describing the often
“unrealistic” optimism of such patients as a consequence of failure in communication
between doctors, patients, and nurses (The 1999). Doctors often frame their communi-
cation with patients in the “short-term perspective,” restricting themselves to informa-
tion about the current phase of the illness and thereby sustaining the “system of hope”
that underpins the ideology of the medical institution (de Swaan 1985).5
It would seem at first sight that the verpleeghuis as an institution that specializes in the
care of geriatric patients suffering from severe impairment should be more professionally
equipped to deal with the ambiguities surrounding the dying process. But even though
T H E WA R D A S A DY I N G S P A C E
O N TO U C H I N G T H E OT H E R
In a discussion of Jacques Derrida’s last interview before he died, Didier Fassin (2010)
reflects on the gap between a death foretold and the hope of life, in the context of an eth-
ics of survival. Using biographical fragments of AIDS patients whom he worked with in
South Africa, Fassin shows how survival as a deferment or postponement of death
becomes an ethical space in which the dimension of human meaning is opened up (see
also Derrida 2004 and Cohen 2006). He describes how persons living under the shadow
of a death foretold live out the remainder of their lives with heightened intensity and with
the hope that their memory will live on after death so that they will continue to exist for
others after bodily extinction. There is a hope of moral rebirth and spiritual felicity encour-
aged by the many churches in South Africa that recruit believers from the rising popula-
tion of AIDS sufferers.
In contrast to Fassin’s respondents, who were all still living within the community of
neighbors and kin and were able to get support from these networks of care, verpleeghuis
patients have already undergone a process of social death at the time of their admission
to the institution. Mw. Overbeek probably came closest to the kind of death that Fassin
N OT E S
REFERENCES
Cadge, Wendy, and Clare Hammonds. 2012. “Reconsidering Detached Concern: The Case of
Intensive-Care Nurses.” Perspectives in Biology and Medicine 55 (2): 266–82.
Cohen, Richard A. 2006. “Levinas: Thinking Least about Death: Contra Heidegger.” Interna-
tional Journal for Philosophy of Religion 60 (1/3): 21–39.
Costello, John. 2006. “Dying Well: Nurses’ Experience of Good and Bad Deaths in Hospital.”
Journal of Advanced Nursing 54 (5): 594–601.
Das, Veena. 1998. “Wittgenstein and Anthropology.” Annual Review of Anthropology 27:171–95.
———. 2007. Life and Words: Violence and the Descent into the Ordinary. Berkeley: University
of California Press.
Derrida, Jacques. 2004. “The Last Interview.” SV, November, 1–16. http://m.friendfeed-media
.com/1a5bc7e65ea7a00a0fcfda2ad242360ed9f2d3c4.
———. 2005. On Touching—Jean-Luc Nancy. Stanford, CA: Stanford University Press.
de Swaan, Abraam. 1985. Het Medisch Regiem. Amsterdam: Meulenhoff.
Elvey, Anne. 2006. “Touching (on) Death: On ‘Being Toward’ the Other in the Gospel of Luke.”
Bible and Critical Theory 2 (2): 15.1–15.17.
Fassin, Didier. 2010. “The Ethics of Survival.” Humanity, Fall, 1–15.
Glaser, Barney G., and Anselm L. Strauss. 1965. Awareness of Dying. Chicago: Aldine Publishing.
———. 1968. Time for Dying. Chicago: Aldine Publishing.
———. 1970. Anguish: A Case History of a Dying Trajectory. London: Martin Robertson.
Good, Byron. 1994. Medicine, Rationality and Experience. Cambridge: Cambridge University
Press.
Jenssens, Rien J. P., A. Ten Have, and Zbigniew Zylicz. 1999. “Hospice and Euthanasia in the
Netherlands: An Ethical Point of View.” Journal of Medical Ethics 25 (5): 408–12.
Keizer, Bert. 1994. Het Refrein is Hein. Nijmegen, Netherlands: Sun.
Kübler-Ross, Elisabeth. 1969. On Death and Dying. New York: Macmillan.
Lawton, Julia. 2000. The Dying Process: Patients’ Experience of Palliative Care. London: Routledge.
Moraru, Christian. 2006. “Touching: Proximity, Remove and the Measure of Things.” Sym-
ploke 14 (1–2): 306–10.
Pool, Robert. 2000. Negotiating a Good Death: Euthanasia in the Netherlands. Binghamton, NY:
Haworth Press.
Saunders, Cicely. 2006. Selected Writings, 1958–2004. Oxford: Oxford University Press.
7 10 • ROMA CHATTERJI
Siebold, Cathy. 1992. The Hospice Movement: Easing Death’s Pain. New York: Twayne Publishers.
Sudnow, D. 1967. Passing On: The Social Organization of Dying. Englewood Cliffs, NJ: Prentice
Hall.
The, Anne-Mei. 1997. Vanavond om 8 Uur: Verpleegkundige Dilemma’s bij Euthanasie en andere
Beslissingen van het Levenseinde. Houten/Diegem, Netherlands: Bohn Staflen Van Loghum.
———. 2005. In de Wachtkamer van de Dood: Leven en Sterven met Dementie in een Verkleured
Samenleven. Amsterdam: Thoeris.
Van Dongen, Els. 1997. “Ongelukjes en Niet-Ongelukjes: Infantilisering en het Oude Lichaam.”
Medische Anthropologie 9 (1): 41–60.
Lisa Stevenson
The house where Sila lives with her parents is a boxy wooden structure, stained brown,
with a row of bedrooms along a hall, and in the living room a small picture window that
looks onto the tidal flats of Frobisher Bay. The window usually has a curtain drawn across
it. On the walls of the living room are photographs of all the children, including Issac,
who died in a snowmobile accident. Below the house, on a jumble of boulders, Sila’s
mother and an older woman were sitting, making a fire for tea and eating pitsi, dried fish.
Every now and then they would brush away the mosquitoes massing around their heads.
The receding tide had left wasted rocks and seaweed scattered across the grayish mudflats.
Farther out there were people looking for clams, heads bent, white plastic bags flapping
in one hand and a spoon in the other.
Sila looked as she usually did—her hair pulled tightly against her forehead, her eyes
darkened by eyeliner, wearing jeans and a T-shirt. The only thing that was different was
the pair of rubber boots she was wearing. She had lent me a pair, too, which I pulled up
over my maternity pants. Walking out onto the mudflats, now veined by shining saltwa-
ter rivulets, she began to tell me more about the dreams she’d spoken of the day before.
“Usually,” she began, “when I have a dream about somebody passing away . . . somebody
always passes away. And when I get up . . . I wake up friggin’ cranky and just knowing
that somebody I know is going to pass away but I don’t know who.”
Such dreams—unbidden and unwelcome—portend a death. But there are other
dreams, too. She tells me a dream in which she and a dead friend meet to smoke a final
joint. In turn, that dream reminded her of another—one in which that same friend, look-
7 12
ing at her from the porch of the Northmart, the local store, tries to speak, tries to say
something to her, but is unable to.
And so, one dream summoning another, we walked out into the bay, sitting for a while
on a stranded boulder and then getting up quickly to move closer to the shore when the
incoming tide started rushing past our feet. Some of the dreams she told were properly
hers, in the sense that she was the dreamer. Others were dreams her best friend told her
before she committed suicide, and still others were dreams her own mother had told her,
dreams her mother had dreamed when she was pregnant with her—and feeling suicidal.
Suicide encircled the stories—her mother’s suicidal dreams, her friend’s dreams of
suicide before she took her life, her own dreams of meeting a boyfriend who had com-
mitted suicide, and a final story about her namesake who had committed suicide.
Listening to the succession of dreams pressing outward like the pulsing of blood from
an arterial wound, I was caught in a stream of stories about death and the dead. Yet
strangely, the dreams were told in such a way that I came to think they were also about
life and the living. I want to say that through dreams she described a life in which she is
encircled by death and the dead, but is also doggedly alive. Is it possible that all stories,
like dreams, are alive in the sense that narrative makes a life for the author, even if the
story itself describes the way death circumambulates that life?
In some sense, what Sila provides is stories in the time of suicide. The dreams she tells
and the telling of the dreams come after the searing pain of being there when someone
chooses to die—a pain that I have not found a way to write about directly. Instead I am
trying to write and describe the living that goes on in the company of dying—what I am
calling life beside itself. That kind of living, that life, seems to contradict some tenaciously
held assumptions—assumptions that are central to colonial and bureaucratic regimes, but
that also seem to slip into our own anthropological discourse from time to time.
One of those assumptions is that it is possible to locate something like “life itself”—
a kind of biological persistence that might be preserved at the expense or exclusion of life
in community. Life itself—a central object of the welfare colonialism through which
Canada has long governed its Arctic territories—is also the short-term object of many
suicide-prevention campaigns where keeping people alive has become the primary goal.
My argument in this chapter is that when we go looking for “life itself” (even if we hold
that such life is actually “bare life” and thus a product of diabolical exclusions such as the
kind João Biehl documents in Vita [2005] or Giorgio Agamben describes in Homo Sacer
[1998]), we actually find life-beside-itself.
Michel Foucault argued that modern forms of power (which he called biopolitical) have
increasingly turned to control over the life of a population (rather than the maintenance
of territorial boundaries) as the site of enacting their sovereignty. In a biopolitical regime,
the maintenance of such life itself—the biological persistence of a population—places
death “beyond the reach of power, and power has a grip on it only in general, overall, or
statistical terms” (2003, 248). Biopolitics is active with regard to life, and passive with
regard to death. It makes populations live and lets portions of the population die.
We always used to hang around and say whoever passes away first we’re going to go and
have our last drink or smoke in one of our dreams. So I had a dream—it was me and Linda
and her two kids’ dad. He was driving and we were in between High School and Brown
Building, just parked there, and we had a nice view of the town. And we started smoking.
And she looked at the joint and was like, “See . . . I told you I was going to come back and
we were going to smoke!”
So promises made in life are kept in dreams. And to whom does the dream belong
really? Sila or Linda? The dead return, as they promised they would, and a friendship,
begun in life, is enjoyed in death. “We had a nice view of the town,” Sila tells me. A prom-
ise, Nietzsche reminded us, projects the self, and by extension life, into the future. For
Nietzsche this is what the self was—a series of promissory notes that give the illusion of
continuity over time. But what happens when the life of the self, projected into the future,
7 14 • LISA STEVENSON
is no longer living? Such dreams are not simply the subjective fabulations of the dreamer,
but another time, a discrepant temporality in which the dead and the living can meet
again. A temporality in which it makes no sense to talk about “life itself,” but instead of
life beside itself. The languorous pleasure of this dream—two friends smoking a last joint
and the promise of a friendship in death—is disrupted by the next dream she tells:
But the last dream I had about Linda was . . . It was wintertime and I went [to] Northmart
and I was walking all alone, I couldn’t find any of my friends, and I saw her and she had
all her winter stuff on and we were just at the porch. We were waiting for a cab but there
was nothing coming. So I just started going home. It was like we wanted to say hi to each
other but . . . we couldn’t . . . I don’t know.
This was different. She told me some beautiful, some sad, and some terrifying dreams.
But as she told the dreams her voice had its own force. It lifted away from her body. She
was telling me something; the filaments of story reached outward. I wonder, then, if we
don’t lend enough importance to the grammar of a life. Do we at least begin to create a
world for ourselves through simply stating that something, anything, is?1
Listening to the tape I made of our conversation later, however, I realized that there
were moments when her voice did become low again. It happened in the interstices of
the stories, between one dream and the next. “I don’t know . . .,” she would say, and her
voice, low and flat, would trail off as if each dream was a proposition that she would lose
faith in once it had been stated. What if that isn’t the way it is? What if I haven’t managed
to communicate how it is? What if this isn’t a livable world?2
These dreams, I realized, were more than curiosities, more than a cathartic retelling
of past events. Each seemed to encapsulate or at least gesture toward a whole epistemol-
ogy: How do we know and what do we know about the dead? About ourselves? What is
the time and place of the dead?
What, then, is the sense of the word know in Sila’s assertion that she “knew it was her,
but it wasn’t her?” What does it mean to know it was Linda, but also to be able to state with
conviction that “it wasn’t her”? What is this sense, familiar to dreamers, that the rules of
everyday life, especially the rule of noncontradiction, no longer apply? The simultaneity
of dreams seems to compress something that is and then later isn’t into something that is
Perhaps it’s my own dreamlike association, but I keep thinking of an image of two alarm
clocks that I first came across while I was writing my dissertation. In a government pub-
lication ominously entitled Eskimo Mortality and Housing (DHWC 1960, 44), there is a
photo of a young girl in a tent sitting on a sleeping platform with her legs stretched out
before her and her baby asleep beside her. Everything is neat and tidy and in its place.
The woman is smiling. The caption below the photo reads: “A clean tent interior, Lake
Harbour, July, 1955. Why two clocks? Note the stone seal oil ‘lamp’ and the wooden frame
above it on which pots and the kettle are suspended” (44).
Sure enough, when you look closely enough, you can see on the counter beside the
sleeping platform two almost identical round-faced alarm clocks with bells on top.3 Why
two clocks indeed? The question is both derisive—these Inuit have no indoor plumbing,
and only one bed for a family, but two alarm clocks—and bewildered. The excess, in a
document designed to demonstrate the dire inadequacies of government housing for
Inuit, is curious, but also almost galling. Do Inuit really need such luxuries? One alarm
clock would be enough to produce the regulated life that the colonial bureaucrats are
trying to inspire and that researchers were trying to measure. One alarm clock is enough
to train and discipline a whole family to wake at the same time each morning, each sea-
son, no matter where the sun is outside the door.4
It has now been half a century since Inuit families were brought from their dispersed
camps on the land to settlements clustered around administrative centers. Is it possible
that, as others have suggested, territory is a minor trophy of colonialism—when com-
pared to the domination of time?5 However we feel about the answer to this question,
there remains a curious affinity between clock time and what I have called elsewhere
“anonymous care” (Stevenson 2012). Clock time homogenizes time and empties it of its
7 16 • LISA STEVENSON
subjective and emotional qualities, just as anonymous care is indifferent to who precisely
is being cared for, thus in some sense standardizing what it means to care.
During the colonial period Inuit were charged with adopting the way of life of a peo-
ple—the Qallunaat (or non-Inuit)—for whom time was an extractable resource and for
whom “a life” could be invested wisely or foolishly.6 Clock and calendar time reifies min-
utes or seconds of time into slots, “into which we ‘drop’ activities or commodities which
we can ‘save,’ ‘spend’ or ‘waste’ ” (Christie and Halpern 1990, 742).
Inuit who came to live and work in Iqaluit, then known as Frobisher Bay, in the 1950s
(first on a temporary basis and then permanently) resisted the dramatic reordering of
time that a welfare bureaucracy demanded (Tester 2006). Out on the land, Inuit hunt
when the weather or ice conditions are favorable, with little regard for what time of day
it is. People generally eat when they are hungry and sleep when they are tired. In the
settlement, Inuit were expected to work regular hours on a regular weekly schedule. It
was no longer appropriate to go hunting “when the conditions were right.” Describing
the pain of being taken from her parents’ camp on the land near Igloolik to a residential
school, one woman recalled, “We were so controlled. Every minute of the day. We had to
line up for this and line up for that. And we couldn’t do this or that.”
The image of two alarm clocks recurs in the archival record. Phyllis Harrison, a social
worker in Iqaluit who published a piece in 1962 on what she called the Inuit transition
from the “stone age to the atomic age,” was also unsettled by two alarm clocks she notices
in the home of an Inuit family. For Harrison the clocks were a sign that the Inuit were
trying desperately to fit in with non-Inuit norms of cleanliness and time management
and sometimes overdid it. Writing about Anawakaloo, a woman who had been given
subsidized housing by the government, Harrison writes: “And time! At camp, there’d
been nothing to divide time except night and day, hunger or the urge to sleep. Now two
shiny clocks ticked busily—a sign of her over-anxiousness, not to forget when it was time
for school—or Anawakaloo to go to work” (Harrison 1962).
One clock, one temporality, is surely enough. Two alarm clocks are slightly scandalous.
Perhaps the clocks are also uncanny, in the way twins are uncanny for Freud. In having
two clocks, the clocks cease to be simply a functional tool, useful for producing disciplined
subjects. Amos Oz has said that when he was a child he dreamed of becoming not a writer
but a book. Perhaps now we dream not of living orderly lives, but of becoming clocks. We
wear clocks, as watches, on our bodies like a second skin. It becomes hard to say whether
the clock becomes like us, with its “hands” and its “face”—or we become like clocks,
experiencing our bodies as biological clocks. What’s certain is that the clock becomes such
a familiar tool that we can represent it to ourselves, truly notice its presence, only in a
moment of shock—as when there are two clocks instead of one.
In 1955, the same year the picture of the two clocks was taken, John Willis, the medi-
cal director on board the Eastern Arctic Patrol, returned with his own image of two
clocks, this time a “photograph in prose” rather than an actual photograph. He wrote,
“One tent had two perfectly good alarm clocks ticking side by side and set within a
The next morning when we woke up we see him holding the Teletubby and he told us all
to come out and they were making a fire out there. And we were wondering why he was
holding the Teletubby and making a fire out there. We were walking down the stairs and
all of a sudden—like he’s holding on the top of the Teletubby’s head—and out of nowhere
it just starts speaking. I don’t remember what it said. And so my great-uncle, he threw it
into the fire, and you could see really dark, black soap, going anywhere, all over the place,
and then it just went into the ground and disappeared.
And the next night we were killing Elmo. Yeah, so we were beating up the rest of the
dolls.
Conversion to Christianity is here glossed as not letting the spirits of childhood bother
you anymore. Taking place over a century and a half, conversion to Christianity is not
something that is ever complete. It’s not surprising that the contest between different ways
of approaching what is alive and real should also take place in the realm of toys—those
7 18 • LISA STEVENSON
objects that animate our childhood and are simultaneously real and not, alive and inert, fact
and fiction. Teletubbies that talk in deep voices are exorcised, the deep black soap of their
insides disappearing into the ground.
So rather than decisively unpacking what it might mean for an Inuit woman to have
two clocks, I want to question also my own (and Willis’s) sense of the strangeness or
uncanniness of having two clocks. I want to suggest that part of this has to do with the
doubling, and the doubling of a timekeeper when time is something we think of—at least
in the workaday world that the Inuit colonial administration was trying to impose—as
importantly singular. So we have the doubling of something that usually exists by itself
(one clock at the side of a bed, as a token of the category clock, as a token of time passing),
here appearing in a pair, disrupting our sense that we know what a clock is for, that we
know what a clock, or time, is. The possibility of a clock-in-itself seems to be dissolving.
Returning now to the flush of Sila’s dreams, I am suggesting that the dream-time is
contradictory and, in that sense, importantly doubled. Sila tells me another dream. This
time it’s a dream her mother had when she was pregnant with Sila. The dream concerns
three friends of her mother’s who had recently died. One had died by suicide, another
had got “lost” (presumably on the tundra or ice, I didn’t ask), and Sila couldn’t remember
how the third had died. The dead friends were menacing her mother, threatening to fol-
low her when she tried to leave them and go “home” to return to the living. Sila explains:
Cuz it wasn’t very nice where she was. It was like scary, creepy or something. She [her
mother] was saying “Eeee, I wanna go home now!” and those three dead people were say-
ing “Malijangajarit,” I’m going to follow you. Seriously: “I’m going to follow you!”
And she was like, “No, I’m going home! You guys can’t come!” Because she knew they
were dead, but . . . when you dream about somebody who’s dead, you just can’t say, “Hey,
you’re dead.” You just think about it.
Through telling me her mother’s dream Sila describes the strangeness of knowing
something that can’t be expressed in the time of a dream. Knowing something in two
temporalities. The interesting question, of course, is why you can’t say: “Hey you’re
dead!” to someone in a dream. Partly, I think it’s a question of the dead being both dead
and not dead, much in the way Linda was and was not Linda in Sila’s earlier dream. That
is, the dead may be dead in waking life, but not dead in the dream. And the dreamer may
have both knowledges simultaneously. And so while Linda may have a singular aspect,
she is two things at once: dead and alive.
Here things get complicated; discrete forms of knowledge and agency are hard for me
to disentangle, though perhaps that’s precisely the point of dreaming. For the sake of
clarity (however ill-advised when dealing with dreams), let me outline a few things about
how this particular dream of the three dead friends worked. First, when Sila’s mother told
an elder that she had dreamed about her dead friends, the elder immediately knew that
She had a dream that she killed herself. And I was at the hospital, crying and looking for
her, to see which room she was in, and she was like, “I’m right here! Hello, Sila! I’m right
here. Why can’t you see me?”
She said I was still crying and she was waving [her hand] in my face. “Hello, I’m right
here, Sila.” But I can’t . . . then she realized . . .
After that [dream] she killed herself . . . I don’t know.
Once again, Sila’s I don’t know at the end of the retelling of a dream marks her ambiv-
alence about what it means to know something, and the way that ambivalence marks the
contours of her subjectivity. For some, the webs of phatic interjections in a conversation
are a constant reaffirmation of hope (“Anyway, wow!”; “Can you believe it!”; etc., etc.); for
others they seem to call on the listener to accede to a kind of agreement (“You see what
I mean!”; “Amazing, isn’t it?”). But for Sila the words that fill in when no other words
At a party in Iqaluit, a psychiatric intern from Toronto (who had flown in to do consulta-
tions in several Baffin communities) comes over to talk to me, hears about my research,
and proceeds to tell me she’s convinced that much of the suicide problem would disappear
if only parents would make sure their children and teenagers went to bed by 9 p.m.7 I
was affronted at the time, feeling the way her comment resonated with so much colonial
advice on keeping clean, keeping warm, and being good Canadian citizens. But I also
knew what she meant; I, too, need a lot of sleep to stay sane.
The psychiatrist was right to point out that many children and teenagers don’t have
regular bedtimes. In the springtime young people, responding to the endless daylight,
often stay up into the early hours of the morning and then sleep in past school time. I
celebrated one seven-year-old’s birthday at eleven o’clock at night when the sun was still
slanting across the bay, the wind had died down, and the teenagers had finally finished
playing a game of golf across the soggy tundra. We played circle games with dice, ate
barbecued seal meat cooked over an open fire, and had juggling contests. The children
played with the toy trucks and cars scattered outside our tent until three or four in the
morning.
CONCLUSION
The question of the clocks does not ultimately need to be resolved. Have Inuit been
fully transformed into successful bureaucratic subjects?—have they learned to think
like a clock? Have any of us? Why two clocks after all? But I am arguing that there are
other ways of being in time, other ways of looking at life in time that point to other pos-
sible worlds, times, and selves—worlds, times, and selves that do not always require
self-sameness. I recognize that such a project risks being trapped by the paradigm in
anthropology of reading the Other as a corrective to the Self. However, in the complexity
of the Canadian colonial/postcolonial, these modes of being are constantly encountering
one another, constantly grappling with the difference of the other, and so I think there
is more at stake. The location of such an Inuit temporality is complex: historically it is
located in the memories and remnants of a presettlement past; geographically it is found
out on the land away from town,13 but existentially it is carried in the bodies and
dreams of Inuit as they live out their lives in what Max Weber pessimistically called the
iron cage of modernity.14 For the Inuit that cage seems to have something to do with the
biopolitical imperative that they seize “life itself” instead of recognizing the fact that
knowing is often doubled: we know and don’t know at the same time; life is and isn’t
itself.
If Inuit still manage to periodically lose themselves in time—on the basketball court,
out on the land—and if the bureaucratic rationality always works to “find” lost Eskimo
souls, what does this say about the colonial context in Canada, when the process of Inuit
assimilation to southern Canadian norms is still being carried out? At what cost do Inuit
youth belong, as they do, to Canadian bureaucratic society, where life itself has become
a secular sacred? With what words do we describe the pain of also belonging to another
time—that of the unfound Eskimos, of driving around and around, or that of the dream-
world in which dead friends look out at the view? How do we pose the question of suicide
alongside the question of time?15
NOTES
REFERENCES
Agamben, Giorgio. 1998. Homo Sacer: Sovereign Power and Bare Life. Stanford, CA: Stanford
University Press.
Battaglia, Debbora. 1995. “On Practical Nostalgia: Self-Prospecting among Urban Trobrian-
ders.” In Rhetorics of Self-Making, edited by D. Battaglia, 77–96. Berkeley: University of
California Press.
Benjamin, Walter. 1968a. “The Storyteller: Reflections on the Work of Nicolai Leskov.” In
Illuminations, 83–110. New York: Harcourt Brace & World.
———. 1968b. “Theses on the Philosophy of History.” In Illuminations, 253–63. New York:
Harcourt Brace & World.
———. 1999. Selected Writings. Vol. 2, pt. 2, 1931–1934. Cambridge, MA: Harvard University
Press.
Biehl, João Guilherme. 2005. Vita: Life in a Zone of Social Abandonment. Berkeley: University
of California Press.
Binswanger, Ludwig. 1993. Dream & Existence. Atlantic Highlands, NJ: Humanities Press
International.
Christie, Laird, and Joel M. Halpern. 1990. “Temporal Constructs and Inuit Mental Health.”
Social Science and Medicine 30 (6): 739–49.
Degnen, Cathrine. 2001. “Country Space as a Healing Place: Community Healing at Sheshat-
shiu.” In Aboriginal Autonomy and Development in Northern Quebec and Labrador, edited by
C. H. Scott, 357–78. Vancouver: University of British Columbia Press.
DHWC (Department of Health and Welfare Canada). 1960. Eskimo Mortality and Housing.
Ottawa: Department of Health and Welfare Canada, Indian and Northern Health Services
Directorate Canada, Northern Administration Branch.
Foucault, Michel. 2003. Society Must Be Defended: Lectures at the College de France, 1975–76.
New York: Picador.
Graburn, Nelson. 1982. “Television and the Canadian Inuit.” Etudes/Inuit/Studies 6 (1): 7–17.
Graburn, Nelson, and Pamela Stern. 1999. “Ce qui est bien est beau: Un regard sur la beauté
chez les Inuit du Canada.” Terrain 32:21–36.
Harrison, Phyllis. 1962. “Eskimos in Transition.” North 9 (5): 14–16.
Hutcheon, Linda. 1988. A Poetics of Postmodernism: History, Theory, Fiction. New York:
Routledge.
Pandolfo, Stefania. 2000. “The Thin Line of Modernity: Some Moroccan Debates on Subjec-
tivity.” In Questions of Modernity, edited by T. Mitchell, 115–47. Minneapolis: University of
Minnesota Press.
Robertson, Roland. 1992. Globalization: Social Theory and Global Culture. London: Sage Pub-
lications.
Stevenson, Lisa. 2006. “The Ethical Injunction to Remember: Memory, Cultural Survival and
Ethics in Nunavut.” In Critical Inuit Studies, edited by P. Stern and L. Stevenson, 168–83.
Lincoln: University of Nebraska Press.
F O R G E T T I N G A N D S U RV I V I N G
When I settled in Cambodia in September 1990, I felt as if I were moving into Jean
Delvert’s book Le paysan cambodgien (The Cambodian Peasant). This classic study had
been the major reference for students of Cambodia since its publication in 1961. Drawing
on data gathered at the end of colonial times in the early 1950s, it describes a peaceful,
simple world in which Buddhist villagers make their living from their rice fields and their
natural environment. Of course, in 1990 I was not allowed to live outside Phnom Penh
since many areas in the country were still controlled by the Khmer Rouge guerrilla forces.
But during my short but frequent trips outside the capital, the palm sugar trees planted
on the dykes separating the rice fields, the slow movement of the oxcarts, the serene
smiles of the people met on the road gave me a strange feeling that the Cambodians—
particularly those living in the countryside—had gone through the totalitarian Democratic
Kampuchea regime (1975–79) without any major trouble, confirming Delvert’s imaginary
view of a forever unchanging Cambodia.
It seemed to me that no mark had been left of the genocide that had killed—in one
way or another—almost a quarter of the Cambodian population less than fifteen years
earlier. Extreme poverty and insecurity—including thousands of land mines—were of
course devastating, but, rather than a clear trace of the Khmer Rouge destruction, they
could be seen as a consequence of the political and economic isolation of Cambodia as
much as of the military activity of the opposed armed factions (including the still-active
Khmer Rouge guerrilla forces). The most outstanding traces were the huge number of
72 9
widows struggling to feed their children and to bring them up. I was also struck by the
way people ate their meals. They did so quickly and in silence, with serious expressions
on their faces. Even during wedding ceremonies, guests ate as if their food could be
stolen, as if it was the most important thing in their lives, as if they were making up for
lost time or were eating for those who had starved. On the other hand, people were
obsessed by the necessity to save money. Money—or more often gold, whose exchange
rate was more stable and which was easier to hide1—and the cost of goods were the main
topics of conversation. My Cambodian friends could spend hours asking each other how
much they had spent on a bunch of bananas or a piece of fabric at the market, not to
mention a motorcycle or a house. The few foreigners who lived in Phnom Penh at that
time were bored with this and sought conversations on less materialistic topics. In hos-
pitals, Western medical professionals working in NGOs, for example, were upset by what
they called the lack of medical ethics and the indifference to the patients’ comfort and
recovery shown by their Cambodian counterparts (Guillou 2009).
Many people had remarried and had changed their names. Changing one’s name is a
common practice among Khmer when one seeks to change one’s life and “upgrade” one’s
destiny. In the countryside, paddy, fruits, and vegetables were planted on some old killing
fields so that the ghosts would leave these places and find new dark, uninhabited shel-
ters. Instead of the obsessive recollections of the traumatic past that I had been led to
expect, I was discovering people using their energy to make a living and to rebuild their
lives. Even as recently as in 2010, in the village where I work in western Cambodia, I met
a man in his sixties who had never spoken to his new wife and children about his former
deceased family. They sat around us and listened to their father’s story for the first time.
Although speaking about the genocide and personal loss was not taboo, people acted as
if it was better to remain silent if they wanted to forget.
I came to the conclusion, with Maurice Bloch (1996, 229), that “there is not a gener-
alized need of human beings to remember the past,” and I spent the next fifteen years
doing field research in medical anthropology in Cambodia without directly addressing
the question of the Khmer Rouge genocide.
In this chapter, I have tried to understand why I feel it is so hard to analyze the effect of
the genocide on Cambodian society from an anthropological point of view. The answer
that I have found to date is twofold. First, it is linked to how people express painful emo-
tions. It brings us to the issue of forms of narratives of the genocide and perceptions of
time and continuity in Cambodia after the Pol Pot regime. Second, when I arrived in
Cambodia, more than ten years had passed since the massive destruction occurred, and
people had already set up their own collective resilience devices, which helped them to
build a bridge between that past and their future. This resilience system, as I call it, is
framed in the Khmer religious system. Within it, relationship to the land is of critical
importance in the elaboration of a pragmatic idea of continuity—in particular through
the popular Khmer concept of boromey (“potency,” “sacred energy”), which I explain later.
In 1990, one could hardly find a Cambodian family in which all family members had
survived. Everybody I spoke to had lost a sister, a husband, a child, a cousin, or friends,
colleagues, or neighbors.2 During my first four-year stay, it was almost a rule that people
I met introduced themselves and soon described what they had gone through under the
Pol Pot regime. But they did so in a very specific way that sounded unfamiliar and almost
shocking to a young and inexperienced anthropologist. Indeed, people expressed them-
selves in a standardized, stereotyped way, using the same words, the same official expres-
sions that I had heard many times in the mouths of members of the Cambodian People’s
Party. In particular, the official words “three years, eight months, and twenty days” were
repeated over and over to underline the duration of the Khmer Rouge regime. People
would describe in the same stereotypical way the ordeal they had gone through by giving
a detailed account of the number of cans of rice the cook was allowed in the rice por-
ridge—and how, over time, the porridge contained less and less rice and more and more
water and banana trunks and leaves, which is usually food of the pigs. In contrast,
although it was not a taboo, most people would not speak spontaneously of the death of
their family members until they were asked questions about it. I did not know what to
do with all these stereotyped stories, since they seemed unreal and far from expressing
what I considered as true emotions.
Later, after I read Veena Das’s work, I came to understand that the Cambodian people
protected themselves from overwhelming sorrow by using the official words they had
heard so many times in official discourses on the radio and at the party meetings they
had to attend. Moreover, in the 1980s and 1990s, talking about the suffering caused by
the Khmer Rouge regime by using these stereotyped expressions was politically correct
and encouraged by the government. It was the expression of national identity and politi-
cal affiliation to the ruling Cambodian People’s Party with which the expression of per-
sonal suffering was merged.
These stereotypes were less and less used over the years when the political game
evolved following the 1991 Paris Peace Agreement between the four opposing armed
factions, including Democratic Kampuchea. At this time the state memorials (as well as
the former Security Prison S-21, transformed into a genocide museum in Phnom
Penh)—built all over the country in order to gather human remains, to use as proof of
genocide, and to build a sense of political collective memory—were gradually neglected,
and many of them fell apart (Guillou 2012).
In one of his essays about time and narratives, Maurice Bloch (1998) argues against the
central position that Paul Ricoeur, Marshall Sahlins, and Michel de Certeau accord
to textuality in their work on time perception. For example, Ricoeur writes in his most
Several facts can explain why the expression of painful emotions related to the genocide
seemed to me so poor and impersonal in the early 1990s.
First of all, the suffering caused by the death of relatives is hardly ever expressed in
terms of regret, loss, and absence, according to Theravadin Buddhist values. Feeling bad
about the absence of loved ones and expressing it would prevent the dead from leaving
.
the human world and entering the Buddhist cycle of conditioned existence (samsāra) in
order to be reborn. The dead person would stay near his or her relatives as a ghost and
would not be able to gain a higher existence. In peaceful circumstances, during “normal”
agony, religious assistance is offered to the dying person by reminding him or her of the
principle of impermanence (anicca) and helping him or her to leave the material world.
Then, the children’s duty of the utmost importance is to accompany the dead person on
his or her way by “dedicating merits” (oteuh kosal) to them in order to make their future
existence as good as possible. In Khmer popular religious practices, the most pious act
consists in making offerings to the Buddhist monks. This “produces” merits, which can
be sent to the dead by calling their names during a ritual called bangskol. This ritual
can be performed even in the absence of the corpse, which was the case for the great
majority of the people who died under the Khmer Rouge regime. It is organized in many
In this first section, I have aimed to show that forms of silence do not mean that there
are no memory-production and transmission or symbolic-reconstruction efforts. But my
own insistence in wondering why and how it has been possible for so many Cambodians
P E R C E P T I O N O F H I S TO RY T H R O U G H P O T E N T P L A C E S : T H E
N OT I O N O F B O R O M E Y ( “ P O T E N C Y,” “ S A C R E D E N E R G Y ” )
In 2007 I started a new research program that directly addressed the question of the
traces of the genocide. I looked for a village that would agree to welcome me during my
field trips. I had short-listed two areas, in the provinces of Pursat and Kompong Thom,
where I prospected in search of such a village. I had selected these areas because they
had experienced harsh treatment under Democratic Kampuchea and were representative
of average Cambodian village life, with subsistence production of paddy cultivated in
nonirrigated rice fields by Khmer people.13 A friend and former student of mine intro-
duced me to the director of the Department of Culture of the province of Pursat, who (in
addition to other things) was also in charge of the shrine of Grandfather Khleang Mueng,
one of the most famous and potent land guardian spirits (neak ta) in Cambodia. The
director brought me to Grandfather Khleang Mueng’s shrine, and that became the entry
point of my new research. I soon met a young female teacher in Kompong Tralach,14 a
village near the land spirit’s sanctuary. Her family was one of the founding families of
the village. She became my host as well as my guide in the area, along with her forty-
eight-year-old mother and eighty-year-old grandmother. Both women showed interest in
my research, although neither of them had had much schooling.
T H E R E G E N E R AT I O N O F L I F E
Living together after the Khmer Rouge genocide means rebuilding ties with the dead and
helping them get to a higher world.19 It also means, among other things, rebuilding ties
with the native land, where history is embodied, and developing the spiritual energy,
boromey, by all means possible—rebuilding the shrines of the land guardian spirits; organ-
izing sumptuous annual festivals to pay tribute to them (the presence of high-ranking
officials or even guests of royal blood enhances the brilliance of the ritual); finding ancient
statues that have been thrown away or stolen and putting them back in their old place at
shrines near the new statues; protecting the trees and planting Bodhi trees—and besides
all this activity, giving alms to the monks20 and helping to rebuild Buddhist monasteries,
stupas, and statues, for one’s own sake, one’s parents’ next life, and Cambodia’s collective
destiny (Marston 2008). However, all these activities are given new meanings related to
today’s problems such as land-dispute issues, massive logging, and escalating socioeco-
nomic gaps between urban and rural dwellers. Cambodian peasants have been doing so
for twenty years now, and the fruits of their efforts can clearly be seen. Near Grandfather
Khleang Mueng’s shrine, his wife, Dame Khan Khieu, has a smaller shrine where a big,
old samrong tree (Sterculia foetida) was cut down by the Khmer Rouge. In 2010, the head
of the shrine told me that a shoot has slowly begun to grow from the dead stump.
1. The Pol Pot regime had abolished currency and had blown up the National Bank. Wit-
nesses remember the dollars and riels flying all over the building during the mass exodus
from Phnom Penh. People who had been able to hide small gold bars in their clothes proved
more likely to survive. However, Lon Nol riels were still on the streets of Phnom Penh in 1981.
2. Almost one-quarter of the overall Cambodian population (around 1.7 million persons)
died from execution, starvation, overwork, untreated diseases, and other abuses as well as
internal purges during Democratic Kampuchea.
3. The experience was not exactly the same, however, as Heonik Kwon rightly points out,
because the war occurred on Vietnamese soil while most of the American people watched it
at a distance.
4. Kamm (“karma”) or kammaphol (“fruits of the karma”) in current Khmer always refers
to bad actions that bear bad fruit.
5. I wish to thank Bhikkhu Logn Sok Chea, from Leap monastery, Battambang, for his
help.
6. “Thinking too much” is said to bring mental disorder.
7. For example, Novann Khemari is the granddaughter of Non and Van. Her personal name
is constructed after her grandparents’ names, but it also means, she says, “the Khmer vessel
of high rank” because Novann can be decomposed as neavea (literary word for “vessel”) and
van. n. a (from Pali “color of skin” [showing high rank] and also one of the four wishes wished
during New Year celebrations) and khemari (imaginary feminine Pali form of the word “khmer”).
8. Kampuchea and Cambodia are two names of the same origin. Kampuchea is the official
name of Cambodia in the Khmer language. In the late 1970s and 1980s, the use of the word
Kampuchea in English often denoted left-wing political affiliation.
9. In one of the two versions of this myth, Kambu, also known as Kaundinya, comes from
India.
10. Ang (1986) reports that this ritual can also be used in a preventive way if the planet of
one’s day of birth is predicted (by a fortune teller) to have a bad influence at some time.
11. A monk told me that the amount of rice is often changed and upgraded (more handfuls
of rice than real years of age of the patient) in order to extend the individual’s longevity.
12. The anthropologist Fabienne Luco has done extensive fieldwork over a span of more
than ten years in a village in the Angkor area. In her PhD thesis (in process) she underlines
the importance of space in structuring the whole social life. Her findings corroborate what I
have observed myself in western Cambodia.
13. Khmer people represent around 90% of the population of Cambodia.
14. The name of the village has been changed in order to respect the anonymity of the
people I have met.
15. Among other examples, two hamlets are locally called Citadel of Victory (Banteay Chey)
and Siamese Camp (Chumrum Siem).
16. This place is an example of deep interaction between various religious practices, includ-
ing Buddhism in rural Cambodia. Indeed this shrine looks today like a Buddhist sacred
sanctuary (vihear), with its old sacred markers (seyma) (snatched during the Pol Pot regime).
Statues of the Buddha Sākyamuni are placed on the altar, including the remains of a big one
REFERENCES
Ang, Choulean. 1986. Les êtres surnaturels dans la religion populaire khmère. Paris: Cedoreck.
Bizot, François. 1994. “La consécration des statues et le culte des morts.” In Recherches nouv-
elles sur le Cambodge, edited by François Bizot, 101–39. Paris: Publications de l’EFEO.
Bloch, Maurice. 1996. “Internal and External Memory: Different Ways of Being in History.”
In Tense Past: Cultural Essays in Trauma and Memory, edited by Paul Antze and Mickael
Lambeck, 215–33. New York: Routledge.
———. 1998. “Time, Narratives and the Multiplicity of Representations of the Past.” In How
We Think They Think: Anthropological Approaches to Cognition, Memory, and Literacy, edited
by M. Bloch, 100–113. Boulder, CO, and Oxford: Westview Press.
Bloch, Maurice, and Jonathan Parry, eds. 1982. Death and the Regeneration of Life. Cambridge:
Cambridge University Press.
Chandler, David P. 1991. The Tragedy of Cambodian History: Politics, War, and Revolution since
1945. New Haven, CT, and London: Yale University Press.
Das, Veena. 1997. “Language and Body: Transactions in the Construction of Pain.” In Social
Suffering, edited by Arthur Kleinman, Veena Das, and Margaret Lock, 67–91. Berkeley:
University of California Press.
Das, Veena, and Arthur Kleinman. 2001. Introduction to Remaking a World: Violence, Social
Suffering, and Recovery, edited by Veena Das, Arthur Kleinman, Margaret Lock, Mamphela
Rawphele, and Pamela Reynolds, 1–30. Berkeley: University of California Press.
Graeber, David. 1997. “Painful Memories.” Journal of Religion in Africa 27 (4): 374–400.
Filip De Boeck
corpus vile (plural: corpora vilia) [from Latin corpus (“body”) vile (“worthless”)]:
A person, animal or thing treated as expendable, to therefore use as an
experimental subject regardless of whatever loss or damage it may suffer
as a result. Figuratively: the subject of an experiment.
D E AT H A S A D E FA M I L I A R I Z I N G T E C H N I Q U E
Focusing on the ethnographic site of the cemetery, this chapter is situated at the nexus
between (corporeal) intimacy, violence, and the production of social and political criticisms
and moral claims by urban youth in Kinshasa, the capital of the Democratic Republic of
Congo (DRC). More specifically, I will focus on the ways in which, in this urban site, the
vitality of the youthful body and the “life of the corpse,” to use a phrase coined by the
Mexican artist Teresa Margolles (cf. Kittelmann and Gorner 2004), are made to collude
and to collide in today’s urban setting. Youth and death are two categories that normally
exclude each other but that have become intimately connected in Kinshasa since the early
1990s (Vangu Ngimbi 1997). It is this connection that provokes us to think about the
seemingly counterintuitive ways in which young people confronted with powerful societal
problems articulate their sociality and their “law” out of the very source of their own des-
peration and death. By eliding life and death, by placing the city as a whole in the presence
of death, Kinois youngsters remove the distance we would normally place between our-
selves and the dead. And by forcefully taking over funerals and turning their own dead
bodies into a powerful medium to refocalize the refracting histories and experiences of
death within the urban site, by using death as a “technique” of “defamiliarization” (or
ostranenie, a notion I borrow from Viktor Shklovsky’s seminal text “Art as Technique”
[2004])—that is, by converting death into a presence of estrangement that constantly
decenters the taken-for-granted nature of local experiences of the urban—Kinshasa’s
young inhabitants successfully manage to squarely position themselves in the public eye,
743
thereby establishing a highly conspicuous presence in a city that denies them a place
otherwise.
After an ethnographic description of some of the complex ways in which death con-
tinues to be dealt with in Kinshasa’s rural hinterlands, followed by a summary descrip-
tion of the material infrastructure of Kinshasa’s cemeteries and the mourning rituals and
funeral events unfolding around them, the remainder of this chapter offers an attempt
at understanding exactly what the use of death as a technique of defamiliarization entails.
<< R E W : 1 9 8 7
In 1987, I started my first long-term field research in the Mabeet, a remote rural area
situated in the southernmost point of the DRC’s Bandundu province, on the border with
Angola. This vast area of wooded savanna and gallery forest is home to a number of dis-
persed village communities, ethnically dominated by Luunda and Cokwe groups. Three
weeks after my arrival in the area, I attended a mourning ritual during a nocturnal wake
in Nseej, a small hamlet three hours’ walking distance from Nzofu, the larger and more
important Luunda village, where I lived for two years during my field research. It was
already night when I emerged from the landscape of wooded savanna and started to walk
the narrow path leading into Nseej, which turned out to be nothing more than a couple
of huts. In front of one of these grass-thatched mud houses two small groups of men,
women, and children were sitting around two fires. The groups included the deceased’s
wife (uluund: mufidi, mufiil), some of the deceased’s children, nephews and nieces, some
of his maternal uncles, some older brothers, a number of in-laws representing the widow
(usually her [classificatory] father and/or one of her maternal uncles), as well as a ritual
specialist (mbuki) and his assistant (nsadi a mbuki). They were all quietly singing song
lines from the munem, a complex mourning song cycle consisting of hundreds of sayings
and proverbs.1 Now and then, their singing was interspersed with the women’s ritualized
weeping, and by improvised vocalizations by some of the male elders, who, following the
Munem’s rhythm, continued to duel vocally with each other throughout the night, hinting
at the possible causes for this death, and making subtle accusations and references to the
outcome of various divinatory sessions that had been carried out after the husband’s death.
In front of the house of the deceased, a shelter (uLuund: chisaambw or kachikuumbw ka
mufiil, “the little house of the widow”) was erected, for the widow of the deceased is no
longer allowed to enter the house of her deceased husband until the first mourning period
is officially ended, some forty days after the actual burial. She will spend this whole period
under this shelter, seated at the door of the house, which has now become a chimboonzu,
or house of the dead. During these weeks, another widow will keep her company and act
as a caretaker (chikolkol), prepare her food, sleep together with her during the night, and
console her (“pour water on her heart,” uLuund: meem angwichiil kambuny).2
Sitting with the Nseej villagers around the fire, I learned that the actual burial had
taken place some forty days earlier, and that this mourning night (called kutoongam or
Ah, Maman Chantal! No kidding, if someone tells you that you are ugly, thank him, and
tell him: “Why do you call me ugly? You want to know what ugly means? Have you ever
been to a morgue? And did you see how corpses are put on top of each other there, like
parcels? And seeing all these dead bodies, didn’t your heart cringe and didn’t you want to
run away? Some have their eyes wide open, some corpses are already rotting, their mouths
hang open, aah, really, the human body is ugly!
Part of a conversation between two women, recorded during
a matanga nocturnal wake, Camp Luka, Kinshasa, March 2008
The vivid description of the situation in Kinshasa’s morgues, rendered in a casual con-
versation during a nocturnal mourning ritual, stands in sharp contrast to the cautious
and ritualized treatment of death as it existed, and to some extent continues to exist, in
Kinshasa’s rural hinterlands, as the Luunda example above attests (see also Devisch and
de Mahieu 1979 for a detailed description of funerary rituals among the Yaka, who are
the Luunda’s northern neighbors in Bandundu Province, and who have constituted
an important portion of Kinshasa’s population since the early days of its creation
[Roosens 1971]). Deaths, mourning rituals, and funerals still mobilize a lot of social
capital in an urban context such as Kinshasa’s, but, as elsewhere in Congo (Noret and
Petit 2011), the emotional contents of death, its ritual handling, and the affective dimen-
sions surrounding its occurrence have radically changed. These changes are due to several
factors.
First, the specific nature of the city’s infrastructure imposes important transformations
in the way urban residents are forced to cope with death. Few morgues in Kinshasa func-
tion well enough to hold corpses in good condition for more than a couple of days, and
the overall failing nature of public utilities in the city does not help to improve this situa-
tion. One can hardly underestimate the importance of the history of the city’s built form
and its material, physical infrastructure if one wants to understand the ways in which
urban residents unfold, generate, and design urban space in general, or, to bring it back
to the topic of this chapter, the manner in which they deal with their dead more specifi-
cally. For many decades, especially after 1960, Kinshasa was—and to a considerable extent
still is—a city where formal urban planning and architecture remained and remains
almost nonexistent. This was not for lack of master plans. In fact, such plans abounded,
but for various reasons they were never, or only very partially, implemented after inde-
pendence (Beeckmans 2013). Therefore, a significant part of the city’s material infrastruc-
ture, and certainly public utilities such as water supply, electricity, road infrastructure, and
public buildings (administration, schools, etc.), still rely on what was put in place during
the colonial era. By now, however, this colonial infrastructure is mainly present through
its degradation, and its “absent presence”: as a splintering conglomerate of decaying frag-
ments—rotting figments and distant echoes of what once was. Often of a tragicomic
nature, and usually demanding a lot of energy and a high degree of inventiveness to keep
M O M E N T S O F M O U R N I N G : M ATA N G A A N D T H E M O R A L I T Y
OF DISORDER
“Mokolo nakokufa” (The day I die) is a classic title from the great songbook of Congolese
rumba, a musical genre that started to emerge together with a new urban infrastructure
and the novel experience of an urban lifeworld under Belgian colonial rule. Composed
in the late 1960s by Seigneur Tabu Ley Rochereau, and offering a timeless philosophical
reflection on human mortality, this song has since become an inextricable part of the
collective musical memory of Kinshasa. One of the elements that made this composition
so successful is the fact that Tabu Ley conjures up a kaleidoscopic view of an urban col-
lectivity, pieced together from the fragmented perspectives of different individual voices—
all imagining, in the singular form of the first person, the day of their own death: the
singer himself, the pauper, the rich man, the drunkard, the prostitute . . .
It is no coincidence that in this famous song, mortality becomes the prism through
which different splintering perspectives and identities are turned into a collective experi-
ence. Then as now, death is the spectral lens through which the city is imagined as a
shared social body. Even today, in a megalopolis such as Kinshasa where kinship ties,
CORPUS VILE • 75 1
clan and lineage identities, and other forms of social belonging referencing a shared
preurban past have lost a lot of their cohesive power, the dead body is an important social
infrastructure, while the matanga, the mourning rituals preceding the actual burial, have
remained important social events, engendering communal moments of encounter and
creating wide-ranging social networks that are regenerated from one matanga to the next.
As Deborah Durham and Frederick Klaits (2002, 778) remark with regard to funerals in
Botswana, “[P]eople find themselves connected in their very physical well-being through
emotional states and sentimental connections recognized and forged in public space.”
What produces this connectedness between all those present is the sense of shared, col-
lective Trauerarbeit, shaping up around an intimate, often corporeal and tactile, and
always emotionally charged relationship with the body of the deceased.
During nocturnal wakes that last all night and well into the next day, culminating in
the journey toward the cemetery and the actual burial of the corpse, these moments of
mourning bring together relatives, neighbors, and friends. Once the corpse has been
retrieved from the morgue and is lying in repose for public viewing in the family com-
pound or (if the compound does not offer enough room, as is often the case) in the street
or in any other available public space,21 all these people gather around the dead body to
weep, sing, address the deceased, touch and embrace the body, dance around it, and take
care of it until the actual moment of burial the next day. This collective labor of loss is,
therefore, also a ludic happening. Matanga invariably offer occasions for laughter, amuse-
ment, flirting, and excitement; they hold out the promise of new encounters, or the joy
of meeting up with old friends and acquaintances. But at the same time, matanga remain
very weighty occasions in which existing hierarchies and power relations within and
between families, lineages, and clans are reaffirmed or contested.
Usually, the maternal uncles of the deceased are the ones in charge of the funeral.
They decide upon the time and place of burial, and they are also the ones to raise the
necessary money, hire chairs, contract an orchestra and/or choir, contact the authorities,
take care of the formalities for burial, meet the cemetery authorities, supervise the
unfolding of the mourning period until the burial, assemble the deceased’s family (on
the mother’s and father’s sides, and the in-laws), conduct the palavers surrounding her-
itage and funeral contributions, and, most important, establish the cause of death—cer-
tainly in cases where witchcraft is suspected to be at the origin of a person’s death.
Death thus remains an important group event, and a focal point to assemble people
and to reimagine and replenish the social weave in the urban context. Matanga continue,
therefore, to reflect the rhythm of social life in the city. They function as important
motors for the reproduction and renewal of social networks, offering a nocturnal space-
time in which the social landscapes unfolding between people during the day are con-
structed.
Yet in recent years, matanga, as ritualized forms of a shared, collective labor of
loss, also seem to have lost a lot of their socially constructive force. Partly due to the cor-
rosive impact of decennia of political mismanagement and state neglect, which have
CORPUS VILE • 75 3
that borders on the cemetery of Kintambo and that grew out of an illegal squatting area
in the 1970s. Among its inhabitants (who are mostly of Yaka origin—see above), Camp
Luka is known as “the State” (Leta). Camp Luka’s youngsters, who call themselves the
“children of the State” (Bana Etat) or “the children of disorder” (bana désordre), impose
disorder, their “law,” the unruly rules of this strange and ragged state, onto the cemetery
and indeed the rest of the city. They do so in effervescent ways, ludic and violent at once,
during the mourning rituals (matanga) and funerals, and through the materiality and
aesthetics of the body—both their own and the bodies of the dead.
As stated above, the fathers and uncles of the deceased are normally the ones
in charge of the funeral. In recent years, however, the city has witnessed a powerful
reversal of the standard norms and rules that regulate the intergenerational dialogue in
the spheres of kinship and public life. Increasingly, children and youngsters are taking
over control of the mourning and burial rituals. This is especially true when a young
person dies, and as I already indicated, premature deaths have become the rule rather
than the exception. The demise of a young person is an emotive moment of crisis, trig-
gering a lot of anger and fomenting strong rebellious sentiments among the deceased’s
age mates.
This anger is mostly directed at older generations. More specifically, the parents and
elders of the deceased will be the first ones to be blamed for this death. In such a case,
youngsters will invade the scene, single out fathers, maternal uncles, and other elders,
and, typically making use of the available vocabularies of witchcraft that pervade the
urban site, will accuse them of having “eaten” their young relative or friend (balei ye,
babomi ye: they [the elders] “ate” him, they killed him). Usually, such witchcraft accusa-
tions tend to radically alter the course of the funeral itself. The matanga almost invariably
“turns into disorder” (matanga ekomi désordre, pito-pale) to become an intergenerational
battlefield. When that happens, the deceased’s friends, classmates, or just any young
person living in the same neighborhood are likely to take over control of the matanga and
of the funeral rituals. These groups of young people, sometimes in collaboration with
local youth gangs—referred to as kuluna,23 as “strong people” (bato ya makassi), pomba,
or yanke (from “Yankee”) (see also Geenen 2009; Gondola 2009; Pype 2007)—will start
to throw stones at all who are present at the site of mourning. They might uproot the
trees in the compound, or attack the deceased’s parental home, often destroying or burn-
ing it down in the process, while beating up, chasing away, and sometimes even lynching
or burning to death the parents, uncles, aunts, and preachers who are gathered there to
mourn the deceased. Sometimes, the family of the deceased tries to mobilize the police
to regain control of the corpse during the funeral procedures, but often the police refuse
to get involved. And when they do, their intervention often leads to a further deteriora-
tion of the situation. On several occasions in the recent past, youngsters were hit and
even killed by police bullets, provoking yet another round of violent funerals.
In any case, the general atmosphere quickly turns into a chaotic and often very
violent mood that is further enhanced by the youngsters’ singing and dancing, as well as
CORPUS VILE • 75 5
figure 42.2
Copulating with the corpse. Camp Luka, Kinshasa,
March 2007. (Reprinted with kind permission from
R. Lambeets.)
right-foot corners of the coffin, they ask the dead person to direct them to those respon-
sible for his or her death (namely, the maternal [left] or paternal [right] elders, respec-
tively). In response, the coffin with the corpse will lead the carriers to the house of the
person responsible for the “eating” of the dead person. Here, the girls accompanying the
funeral procession play a very active role, because they are the ones who voice the suspi-
cions of witchcraft, directly addressing the culprits while encouraging the dead person
to reveal the truth about his or her death:
It frequently happens that the coffin directs the crowd in this manner to the house of an
elder, which often leads to the destruction of the house and to a public beating or mob
killing of the one thus denounced as a witch by the corpse.
When, after all this upheaval, the funeral procession finally arrives at the cemetery
with the corpse, the young people who followed the coffin on its journey regularly destroy
tombs and often also attack the cemetery’s grave diggers, or mere bystanders happening
to be in the wrong place at the wrong time.
Funerals have thus become much more than moments of political contestation for a
rebellious urban youth. Funeral rites are used to address civic wrongs, but the violence and
anger that are unleashed during these events spring from a place deep inside, far beyond
the level of official state or church politics. The aggressive display of the disorder of affect
(and the affect of disorder) touches on deeply moral issues, and is related to the much more
intimate domains of young people’s own bodies and lives. Their actions pose fundamental
questions with regard to the possibility of intersubjective relations; they address possible
reconfigurations of what kinship might mean, and attempt to redraw the dividing lines
between insider and stranger; or they question the very definition of the notions of ances-
trality and sacrality, and the feasibility of continued intergenerational transmission of social
knowledge. These are some of the issues that I will explore in the next section.
C O R P O R A V I L E A : E X P E N D A B L E YO U T H A N D T H E N O T I O N
OF SACRIFICE
If, as Lévi-Strauss famously remarked in the concluding pages of Tristes Tropiques, cities
are machines, “instruments intended to create inertia, at a rate and in a proportion infi-
nitely higher than the amount of organization they involve” (Lévi-Strauss [1955] 1974,
413), the cemetery of Kintambo seems indeed to be the right place to redefine anthropol-
ogy as entropology, “the discipline concerned with the study of the highest manifestations
of this process of disintegration” (414). But is this what is really going on in Kinshasa’s
burial grounds? It is easy to read a space such as the cemetery of Kintambo, with its
infrastructural degradation and the breakdown of cultural norms and long-standing
notions of social order that accompanies this material decay, as a general metaphor for
the zombified state of a city and a country that, in the words of Kinois, “died” or “rotted
CORPUS VILE • 75 7
figure 42.3
Still from the documentary film Cemetery State (2010). Photography by R. Lambeets.
a long time ago” (mboka ekufi, mboka ebebi), or that are being perceived as terminally ill
and cadavéré.
But are notions of entropy, chaos, disorder, or dissipation of energy adequate tools to
understand the dynamics of a place such as the cemetery of Kintambo? Do they have
sufficient explanatory power to fully capture the meanings embedded in the new mourn-
ing and funeral practices that have developed around it? It is indeed tempting, perhaps
even too obvious, to understand Kinshasa’s postcolonial cemetery as a mere zone of
social abandonment, to use Biehl’s term (2005), with specific Agambenesque connota-
tions, in which the law is in force but no longer has substantive meaning (Agamben
2005). The cemetery of Kintambo and its surrounding slums indeed offer an almost
camp-like infrastructure (as Camp Luka’s name already indicates in itself ) that exempli-
fies the state of exception that has become the rule in postcolonial Congo and beyond (cf.
Norris 2000). This abandonment fully illustrates to what extent Kinois are turned into
homines sacri, collectively reduced to the specific forms of raw bare life—that is, a politi-
cized form of natural life, a life exposed and subjugated to death, placed outside both
divine and profane law. Kinshasa’s young inhabitants strongly sense that they have
become the corpora vilea of a (post-)colonial experiment called Congo, that they are the
expendable subjects of a ruthless necropolitical form of governmentality (Mbembe
2003), of a thanatocracy that is controlled by previous generations who, reducing their
own children to “animals,” have “sacrificed” them in the process.
Indeed, the phrase “We live like animals” (Lingala: tokomi kovivre lokola banyama) may
often be heard in Kinshasa’s streets. But although young people in Kinshasa often speak
CORPUS VILE • 75 9
of children have been excluded from their homes, to be secluded in (mostly Pentecostal)
churches in order to be exorcised (see De Boeck 2008b, 2009a).
As a result of such newly emerging processes of exclusion, children regularly end up
in the street, and the more their numbers grow, the more these street kids—or bashege,
as they are commonly known—are regarded as a real nuisance and a danger to the city.
Today, they are being considered in the same way as the many kuluna street gangs that
are increasingly terrorizing the city’s neighborhoods (and who have partly sprung from
the ranks of this growing army of street “rats”). In public opinion, both categories (“street
child” and “gang member”) have become merged (also because, in part, both are associ-
ated with the space of the cemetery, often the space in which they live or from where they
operate). Moreover both categories are held responsible not only for the increasing sense
of insecurity in the city, but also for the profound banalization and desacralization of
death within the urban context. Most adults in Kinshasa are deeply shocked by the fact
that children and young adolescents “no longer respect the dead.” They are utterly upset
by the fact that children and young people eat and sleep on tombs in the city’s cemeteries,
that they turn funerals into a bêtise that disregards former ancestral beliefs and moral
frames of reference and that mocks long-standing gerontocratic orders and gendered
structures of authority. They are also appalled by the fact that their “children” have con-
verted corpses into a mere “toy” (eloko ya jeu), or that coffins have become like a football
to be kicked around during the soccer “match” that the funeral has become.
This moral indignation is also the general sentiment that is conveyed by Kinshasa’s
numerous TV stations (and in recent years, Kinshasa has indeed witnessed the birth of
an unprecedented number of—mostly privately owned—TV stations) (Frère 2007). Lin-
gala Facile, for example, is the name of a widely watched TV program. Conceived by the
Congolese star journalist Zacharie Bababaswe, this program comes in the form of a
“proximity account” (cf. Pype 2011). The visual pendant of radio trottoir (“sidewalk radio”;
i.e., rumors or gossip), it offers a platform for spectators to send in their own witness
accounts and images, usually filmed with a mobile phone, of what is going on in their
streets and neighborhoods. In this way, the whole of Kinshasa is frequently subjected to
amateur footage showing, among other things, the material decay of the city’s grave-
yards. Similarly, Kinois report about ill-functioning morgues and their rotting corpses,
document and comment upon the life of children in the cemetery, or display and con-
demn the chaotic and violent effervescence that frequently accompanies the burial of a
young person. The widespread use of mobile phones has greatly contributed to a further
intensification of the mediatization of death’s penetration of the public sphere.26
Again, as in Tabu Ley’s song, death, in its enhanced visibility, reveals itself to be a
central focal point of urban life in which different converging views come together. A
divisive yet also uniting presence, it engenders simultaneous multiplicities while also
constituting the unique lens through which the city’s obverse and reverse points of view
come together. In this way, death seems to offer one of the few vantage points from which
the possibility of initiating an intergenerational dialogue might be envisaged, even if that
7 60 • FILIP DE BOECK
dialogue often turns into a dialogue of the deaf. In the eyes of their (grand)parents’ gen-
eration, most people act as if death signifies the end; as if there is nothing beyond death,
as if one just disappears. In sharp contrast with long-standing autochthonous beliefs in
ancestrality (see also Kopytoff 1971), elders find that, in the minds of their children, the
production of ancestors has come to a standstill. And yet the latter constantly exclaim:
“How can we still respect the elders? They are the ones who should uphold tradition, who
tell us about the important place of the ancestors, but when you see how they cope with
the dead, who will become the ancestors, when you observe how corpses are put in the
street, how they are buried hastily, how they are left to rot in morgues, how can we con-
tinue to believe that these corpses will turn into ancestors one day? Our elders have
turned the process of dying into a trivial matter, and they have started to treat the dead
with disrespect. So why should we still respect the elders?”
In this way, funerals have become a means for political contestation against a genera-
tion of postindependence politicians who have squandered the future of the following
generations while refusing to make room for them. But in a much broader sense, death
has also become an occasion for this urban youth to criticize the role of parents and
elders who have, in their eyes, démissionné, who have given up, who no longer seem to
be able to fulfill their promises, whose moral authority has vanished, and who, while
“eating” their children, accuse the latter of “eating” them. In the light of this failure of
gerontocracy, young Kinois claim that “corpses have become the responsibility of the
young people of the neighborhood” (bibembe ekoma ya bana quartier). It is out of neces-
sity, therefore, that the young, in their own words, have become “the directors” (bazali
kodiriger). They take over the control of the dead because elders have abused their power
and authority, have squandered their wisdom, and therefore “have become little chil-
dren” (bakomi bana mike).
Young Kinois have thus designed a new architecture of urban survival for which
death, and the very materiality and aesthetics of the dead body, by seeping so visibly and
violently into the fabric of life, now serves as an inspirational force, a structural support,
a framing device for negotiating social relationships and constructing identities. In a
world where mourning has reconfigured meaning, where cemeteries have become dwell-
ings for the living, and where coffins are likened to the footballs that boys toss around,
the only way to live is to reframe death into something else. For young Kinois who deal
with dead bodies on a routine basis, dying is no longer a departure from life; instead, it
has become that which gives life its significance, density, and directionality. Life in fact
cannot be lived, or spoken, or even imagined outside of the space of death. Youth’s instru-
mentalization of death as the single surface of a prismatic form has thus turned corpses
into points of a strategic retroversion or retroflexion, a curving or bending back onto
itself of the elders’ discourses, and of the city’s own fascination and disgust. For this is
what these urban young do: by means of their funeral raids, they offer a mirror in which
the city’s moral indignation is turned against itself, thereby forcing the city to behold
itself, and reflect upon its own future.
CORPUS VILE • 76 1
Paradoxically, though, this opening up of alternative futures goes hand in hand with
the reintroduction of preurban ritual dynamics, in an “enactment of moral sentiment”
(Livingston 2008, 293). As my long ethnography of a Luunda mourning ritual illustrated,
rather than producing a breach with an ancestral past or with the precolonial ritual vocab-
ularies that are so typical of this Central African region, the lewd songs and insults,
urban youth’s exposure of body parts—the whole play with the body’s surface and its
politics of undress (cf. Masquelier 2005), the “copulating” with the “corpse” and so on—
are playful but also deadly serious replays of long-standing ritual syntaxes. In this sense,
also, one should understand the way in which youngsters ritually ridicule and curse
death and disease, by performing dances in front of the corpse of their dead friend, by
imitating physically impaired people, thereby keeping death, disease, and misfortune
itself at bay.27 In various ways, then, Kinois youngsters shape a future for older ritual
forms of which they often do not even have firsthand knowledge, but which they none-
theless employ anew in the urban context, in a creative act of local actualization—a spe-
cific form of reprendre (Mudimbe 1999).
Echoing AbdouMaliq Simone’s notions of “people as infrastructure” and “social infra-
structure” (2004; 2012), the youthful body thus imposes its scale, its mobility, and its
temporal and relational logic onto the city. Within the urban context of Kinshasa, this
body’s infrastructural importance becomes obvious, for example, through the ways in
which the private and intimate corporeal realms often reveal themselves to be the public
stage par excellence. Think, for example, of the importance of the playful body, of bodily
appearance, and of “stage presence”—as epitomized by the famous Congolese sapeurs
(Gondola 1999), who are so apt at turning the urban nightmare into oneiric lines of flight
(and by using the graveyard’s tombstones as a catwalk, as they often do, their contest of
costumes often literally provokes a collision between the lethal and the ludic).28
Against the order of the state and the church, and their promotion of what essentially
remains a very colonialist modernity, Kinshasa’s urban youth thus introduce their own
moral frameworks. In using corpses as alternative political platforms to speak out, they
introduce death as a powerful tool for self-making and for exercising their critique
against older forms of authority. In this they seem to exemplify and confirm the observa-
tion made by Bogumil Jewsiewicki and Bob White (2005, 1) that, “[a]s death seems
increasingly present in the lives of people in many parts of Africa, emerging forms of
social mourning echo the need for new political futures, and mourning shows itself as
an important terrain for the social production of meaning.” So far, this does not seem to
crystallize, however, into a more formally organized political youth movement. It does
not immediately seem to spark off a Central African Spring (and remember that it was a
corpse—the burned body of Mohamed Bouazizi, a young Tunisian street vendor—that
ignited the Arab Spring in 2010). Kinois youth’s criticism transcends the mere political
level. Theirs is essentially a moral criticism of the world they live in. The outside, the
urban public sphere, is criticized, reshaped by positing it against its opposite: the inti-
mate corporeal space of inner self and intersubjective relations. Through a discourse and
7 62 • FILIP DE BOECK
through songs that refer to lovemaking, sexuality, and play, and by means of a powerful
and transgressive act of symbolic copulation between two bodies—that is, the strong and
youthful body and the corpse, with all of its rotting, disintegrating, dissolving, smelly
immediacy—youngsters shout this basic question to Kinois society as a whole: What
does it mean to be human in the light of the constant threat of sudden disappearance
and annihilation, in a context of systematic abandon and generalized infrastructural
decay and material as well as spiritual insecurity?
Against the omnipresence of death, and the constant threat of being annihilated and
forgotten, the corporeal dimension of juvenile vocabularies of self-realization powerfully
posits the city in the immediate time frame of the moment, the now, to celebrate its vital-
ity and life and to offer an alternative to this degradation. This urban life, saturated with
deadness that numbs everything and everyone, stands paradoxically against what is shown
as the generative dimension of death—that is, the power that death has not simply to
mortify life but in fact to enliven it. At the same time, the strange cartel between youth and
death forces the city to stare into the face of its own death, and thereby into the darkest
corners of its own modalities of existence. Juvenile bodies, whether dead or alive, here
appear as lucid, ludic, but also subversive sites and frontiers of reterritorialization, not only
of official cultural and political programs, but also of the much deeper and darker sides of
what constitutes humanity in this urban setting. They struggle to redefine the vie nue, with
all of the horror and disgust that comes with it, and to reanimate this bare life with new
forms of profane and divine law, in an attempt at injecting elements of sacrality in the
banality of dying, and at exploring the possibility of turning their own bodies into properly
sacrificial bodies. That is also the new meaning of the graveyard. It provides urban youth
with a heterotopic space to express the crisis, and to find forms to both embody and over-
come the disintegration of their state, their city, their society, and its moral values.
CONCLUSION
In this chapter, my focus of attention has been not so much on the processes of zombifica-
tion that strongly pervade the cité cimetière, the cemetery city, that Kinshasa as well as the
“thanatocracy” called Congo have become. Rather, I have focused on the often perplexing
ways in which young urban residents, through their cohabitation with death and the gen-
eration of new forms of mourning and coping with dispersal and loss, endeavor to reframe
the harsh conditions of urban living in Kinshasa into something else. Death makes youth
visible in a city that otherwise condemns them to a peripheral and marginal existence. Death
is the stone that the young throw into Kinshasa’s pool, giving them an agency, and a force
to disturb, to defamiliarize, and to decenter. Through an ethnographic description of their—
sometimes violent—involvement in matters pertaining to death, I analyzed specific local
attempts made by Kinshasa’s youth to turn the aporia of a naked life-form into more euphoric
solutions. In the process, I argued, urban youngsters reconceptualize the camp, the very
territory of death itself, in terms of a more heterotopic space where death may be reconceived
CORPUS VILE • 76 3
as sacrifice. This effort enables Kinois youth to contest and rethink the time of the state and
the postcolonial political order, and in so doing to express their longing for new political
futures. First, funerals offer the possibility to reject current official political and religious
order (all the more surprising given the thorough grasp of the millennial churches on all
other aspects of public life in Congo today). It also offers them an even more powerful
opportunity to redefine Congo’s ongoing economic and sociopolitical crisis in terms of a
primarily moral critique of the specific necropolitics that underpins the postcolonial state of
exception. By replacing the rule of the state, the church, the ancestor, and the elder with their
own rule, which is characterized by “disorder,” young Kinois thus offer a powerful attempt
at reshaping the moral (and religious) cartography of the urban public sphere.
N OT E S
1. This cycle of songs is normally part of the elaborate initiation rituals that take place when
a member of the mwiingoony funerary association dies (see De Boeck 1991a).
2. This widow, a relative of the mufidi, should not have participated at another mourning
night since her own husband’s death.
3. In former times, the mourning period could take up to four months or even a year.
Today, this period has been much shortened.
4. De Boeck 1991b; see also Wastiau 2000 on mahaamb spiritual entities among the
Luunda-related Luvale of the Upper Zambezi, and Turner (e.g., 1968) on similar “shades”
among the Ndembu.
5. Nseew means “arrow,” and is also the word used for a gift made by the wife takers to the
wife givers in order to open marriage negotiations. In the mourning context, the gift signifies
the fact that the widow is divorcing her deceased husband’s family by ritually marrying into
the healer’s clan.
6. This mixture consisted of bark scrapings of the following trees: mupach (Dacryodis
edulis), muund (not identified), mujiw (not identified), and muleeng (Uapaca guineensis, U.
nitida). These scrapings are pounded on a large piece of bark from the nsuumb tree, and fur-
ther mixed with leaves from saansas, mbul a mulwalw, and djaangudjaangu plants (all uniden-
tified). The resulting powder preparation is mixed with hot and cold water and will be used to
ritually “wash” the widow.
7. The same name is given to a subsequent nocturnal wake, some two years after the actual
burial, when the deceased’s own kin group (and thus without the widow and her relatives) will
spend another night together, singing munem songs in memory of the deceased. The phrase
“to disperse the charcoal” is synonymous with “to dethrone a chief.”
8. Syzygium guineense, from the family Myrtaceae. This tree plays a prominent role in
hunting rituals. Its wood is used to make rifle butts.
9. In this specific case it was the sister’s son because a divinatory oracle had revealed he
was partly responsible for triggering the anger of the haamb shade that had caused the hus-
bands’ deaths.
10. The three “gates” again referred to the three dead husbands. By “breaking” the three
gates with her right foot, she assures that her future husband will live.
7 64 • FILIP DE BOECK
11. For a more in-depth analysis of the different meanings of the kapwiip (Swartzia mada-
gascariensis, family Leguminosae), see De Boeck 1994.
12. The mukos tree (Erythrophleum africanum, or African blackwood, in the family Caes-
alpinacea). Its gum is used for purification, as the tree’s name indicates (-kos: “to cleanse, to
wash away”).
13. At other performances of this ritual, I witnessed how the person undergoing the cleans-
ing ritual was made to “copulate” with the earthen figure as well.
14. Sometimes, the kitchen utensils and pots used to prepare food for the deceased are left
on top of the haamb figurine as well. Usually, they are deposited on top of the deceased’s grave,
with the cooking pots turned upside down to “block” and prevent the dead person from return-
ing. Often, also, some personal belongings of the dead person are put on top of the grave.
15. This time the healer used the bark of the musehe (Vangueriopsis lanciflora, a species of
flowering shrub in the family Rubiaceae), also referred to as the “little one of kapwiip” (see note
11), to purify her from the muf spirit and the shadow of her deceased husbands, thereby “whiten-
ing” her (i.e., returning her to life). As in many Luunda rituals, the whole ritual thus unfolded as
a progressive movement toward white, for this is the color of life, while red, in all Luunda-related
cultures (cf. Turner 1967), is a much more ambiguous color that may connote life-giving forces
(as with the blood of giving birth) but also death (menstrual blood, the blood of warfare, etc.).
16. The word cadavéré became a standard Kinois expression thanks to the 1984 hit “Ancien
combattant,” by Zao, a musician from Brazzaville.
17. The cemetery of Kintambo is also the setting of Cemetery State, a documentary film
that I directed (De Boeck 2010).
18. Not only there are numerous burial sites in and around the city of Kinshasa that are
not officially known to the city’s authorities, but many deaths remain unreported because a
significant portion of Kinshasa’s residents have never been registered in the city’s civil registry.
19. I received figures only for the first nine months of 2005, and none at all for later years.
20. A loosely structured association of twelve groups or “stables” (écuries) of self-appointed
grave diggers oversees the cemetery of Kintambo. This association is called Shamukwale, the
name of a village near the Angolan border. At this location people enter into Angola in order
to engage in clandestine artisanal diamond mining. Grave digging is here compared, not
without irony, to diamond digging. The Shamukwale association consists of a number of
separate smaller groups, such as the Ecurie Bana Cimetière, Ecurie Etat-Major or Camp
Kawele, Ecurie Camp PM (Military Police), Ecurie Camp Police, and so forth. Until 2010, the
person recognized by most as the head of the Shamukwale association was the older brother
of one of the cemetery’s administrative officials, who operate under the city governor’s author-
ity. These officials, who still have a makeshift “office” on the cemetery grounds, are supposed
to register the dead and collect certain taxes, even though officially the cemetery no longer
exists. The members of the informal grave-digger groups are all young boys and men from
the surrounding neighborhoods. Other youngsters who offer informal services in and around
the cemetery are often also organized in similar écurie structures. These various groups at the
cemetery of Kintambo offer specific services (digging graves, fabricating crosses, maintaining
the tombs, etc.). Some of these youngsters also offer their services for clandestine burials. Very
often, people who cannot afford to finance a burial are forced to bury their dead in a secret
and nonofficial way. This happens more frequently when the deceased is a young child. Along
CORPUS VILE • 76 5
the dusty road that cuts through the cemetery and forms the access to the neighborhood of
Camp Luka, a small group of male adolescents, members of the Ecurie Tshico, wait to be
contacted by parents who want to bury their child without officially registering the burial with
the authorities. In such a case the burial is carried out at night. Other groups of young people
await nightfall to dig up and steal the coffins of those who were buried during the day. These
coffins are subsequently resold (cf. De Boeck and Plissart 2004, 136). Finally, some youngsters
await the night to pillage the graves in the hope of laying their hands on clothes and jewelry.
21. The physical presence of dead bodies in the street has indeed profoundly reconfigured
the access and use of public space in the urban setting. Some decades ago, in Kinshasa, plac-
ing the body of a deceased person in the middle of the street would have been unthinkable.
In the 1960s and ‘70s mourning rituals took place inside the compounds, while children and
youngsters were barred from any contact with death itself. If a funeral procession passed
through the street, mothers would call their children indoors: children were not supposed to
come into contact with death, since they represent the beginning of life and should not be
contaminated by its end. Today, however, the body of the deceased is often placed upon a bier
in the middle of the street, under a funeral chapel, around which people gather to mourn the
deceased and hold nocturnal wakes accessible to all. To mark the presence of a corpse, streets
are blocked and palm leaves are placed at their entrance. As such, the dead, also because they
have become so numerous, have quite literally taken possession of the urban public space and
constantly redraw the cartography of one’s neighborhood, redefining the meaning and use of
the city’s public space in the process.
22. A recent radio broadcast from Radio Okapi, the UN radio station in the DRC, revealed,
rather unsurprisingly, that child mortality is on the rise again in many parts of Kinshasa’s vast
periphery (Radio Okapi, May 4, 2013), while in the 2013 annual State of the World’s Mothers
(SOTWM) report “Surviving the First Day,” issued by the international NGO Save the Children,
Congo occupies the world’s last position when it comes to the number of newborn deaths
(Huffington Post, May 7, 2013).
23. The word kuluna refers not only to street gangs but also to the violent appropriation
of the matanga itself (interpreted by many older Kinois as an unlawful privatization of the
matanga as public event). The word kuluna is derived from the Lingala verb kolona (“to plant,
to sow, to cultivate”), but it is also a derivative of the French coloniser. Thirdly, it refers to the
military notion of colonne. In a city that does not otherwise give a full right of access to the
urban public sphere, the young thus “militarily” occupy, appropriate, colonize and reterrito-
rialize the cemetery, a pars pro toto for the city and the nation as a whole.
24. Clearly, at that point the deceased’s family members no longer control the funeral, and
often do not take the risk of showing up at the funeral itself. Frequently, it is only after comple-
tion of the burial that the responsibility for the dead person is handed over again to his or her
family, after the latter has paid a fine to the youth that performed the burial. Often, this pay-
ment consists of the muziku, the amount of money raised by the matanga’s participants to
finance the burial.
25. Surprisingly, given the Catholic and Protestant imprint imposed by colonialism onto
the Congolese life-world, and also given the more recent strong impact of new forms of Chris-
tian fundamentalism, death is one of the fields that increasingly seems to fall outside of their
hegemonic control. In recent years, not only has Kinshasa witnessed attacks against elders
7 66 • FILIP DE BOECK
during funerals, but increasingly kuluna street gangs have also started to target churches and
priests. In February 2012, for example, several Catholic churches throughout the capital were
attacked by street gangs, and most recently (14 May 2013), the church of Saint Augustin in the
municipality of Lemba became the target of another kuluna attack. Some of these attacks are
clearly ordered and manipulated by political factions in the city, as was the case in the June
2006 ransacking of the church of Soni Kafuta, one of Kinshasa’s most prominent Pentecostal
preachers, known for his pro-Kabila views. Other attacks seem to originate more spontaneously.
26. YouTube, for example, contains numerous uncensored postings with raw footage
showing mob killings during funerals, in all of their gruesome details.
27. Other ways in which regional ritual traditions are creatively recycled, for example, is
through the performance of dances such as musangu, which is usually performed by Lunda
and Yaka elders on important political occasions such as a title holder’s enthronement. In the
urban context this dance is enacted by the young friends of the deceased to salute and honor
him. And finally, the reuse of older divinatory practices (see above) constructs another bridge
with preurban ritual vocabularies and practices that continue to exert a strong influence on
daily life in the urban setting.
28. As illustrated by the photographic work of Congolese photographer Yves Sambu (see
Sambu 2009).
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CORPUS VILE • 76 7
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CORPUS VILE • 76 9
43
THE VALUE OF LIFE AND
THE WORTH OF LIVES
Didier Fassin
770
distinguished from a value which is conferred by a specific social tie or by membership
of a particular social group. With the Gahuku-Gama, however, the value of an individual
life is primarily dependent on these social criteria. The reaction to homicide emphasizes
the moral nature of the social bonds between individuals and groups of individuals rather
than the inviolability of human life itself” (262). Thus the sanctity of human life and
the equal values of all human beings would be a crucial element of the foundations of
Western heritage.
Writing almost half a century earlier from a radically different perspective and criticiz-
ing Adolphe Quetelet’s [remove accent over first e] famous thesis about the average man
that underlies his programmatic “moral statistics,” Maurice Halbwachs (1912, 97) sug-
gested: “There are good reasons to think that a society has the mortality that suits it, and
that the number of deaths and their distribution at the different ages accurately expresses
the importance a society attaches to prolonging life more or less.” This importance con-
cerns life in general as well as the lives of certain categories whose differentiation by sex,
age, or profession translates into disparities in death rates. Mortality cannot be described
as a random phenomenon, just as death cannot be regarded only as a physical event:
“Death, and the age when it happens, depends above all on life, on the conditions where
it unfolds, and these conditions are social as much as physical” (94). In that, the French
sociologist opposes the Belgian mathematician, who “would compare deaths with the fall
of balls thrown by a man representing nature,” while “the distance traveled by each ball
would epitomize the life of each man”; according to this model, “the average duration of
life would merely result from the laws of chance” (97). Such a view supposes, however,
that “the importance attached to human life, in a given society, does not vary,” which is
definitely not the case, and that the unequal value of life is “the essential cause of the
variations of mortality” (96). Death is therefore a social fact whose fluctuations reflect
the oscillating valuation of life.
How can one account for these apparently contradictory positions? Is it possible to
reconcile the affirmation that the equal value of all humans is a foundational postulate
of our world and the acknowledgment that the relative worth of lives is what explains the
disparities in mortality rates in our societies? Is the anthropology of life irreparably
incompatible with a sociology of lives? An obvious answer to these questions would be
to consider that Kenneth Read’s idea that all human lives are equally sacred pertains to
the moral realm and expresses an ideal principle, whereas Maurice Halbwachs’s asser-
tion that all human lives are not worth the same concerns the social world and describes
an empirical fact. Both authors would certainly have agreed on this distinction. But rather
than trying to solve the contradiction, my intention here is to push it somewhat further,
to recognize that the two statements tell us something different and that their confronta-
tion is more heuristic than their tentative addition or subtraction. The first one is qualita-
tive and concerns the equal sanctity of life. The second one is quantitative and concerns
the actual inequality of lives. Both imply ideas of value and worth—in a moral rather than
an economic sense.
PRECIOUS LIFE
“Pricing life raises daunting questions,” observes Viviana Zelizer (2011, 13). “How can we
establish monetary equivalents for human existence? Should we? Are all lives worth the
same, or are some more valuable than others? Who decides? After the terrorist attacks of
September 11, 2001, Kenneth Feinberg, appointed by Congress as special master of the
Victim Compensation Fund, faced such troublesome issues. Because his compensation
scheme used lost economic values as its main standard, survivors of victims with low or
no earning received significantly less compensation than high earners.” Two facts are
remarkable in this example: the translation of life in financial terms (the families of the
deceased received an average of $3.1 million) and the affirmation of the inequality of lives
(the amounts distributed ranged from $788,000 to $6,379,000, depending on the previ-
ous income of the victim), a situation that could be paralleled with that of the Bhopal
disaster and the legal litigations about victim compensation studied by Veena Das (1995).
Clearly, this economic evaluation of lives lost and the bureaucratic work it implies seem
to contradict the sacredness of life, which would imply its pricelessness. But the varia-
tions, with a ratio of one to nine, in the financial compensation appear to violate the
principle of equality of lives. Indeed, these are the criticisms that were publicly expressed
about the process and its author: How can one dare allocate a financial equivalent to a
S TAT I S T I C A L L I V E S
“There is a distinction between individual life and statistical life,” writes Thomas Schell-
ing (1984, 115). “Let a six-year old girl with brown hair need thousands of dollars for an
operation that will prolong her life until Christmas, and the post office will be swamped
with nickels and dimes to save her. But let it be reported that without a sales tax the hos-
pital facilities of Massachusetts will deteriorate and cause a barely perceptible increase
in preventable deaths, not many will drop a tear or reach for their checkbooks.” This brief
observation by an economist celebrated for his contribution to game theory can actually
be interpreted on two distinct levels: emotional and cognitive. The first one concerns the
attachment one manifests toward the suffering individual as opposed to the distance one
feels for statistics of mortality. The second one involves the differential capacity to appre-
hend a case with a story on one hand and a number with a probability on the other. We
are more susceptible to act in favor of the little girl than of the prevention measure not
only because we are moved by her concrete situation, but also because we cannot seize
the abstract reality of the second example. Statistical lives are not only more distant; they
are also more opaque. Hence their social and moral invisibility.
In the introduction to his famous Discourse upon the Origin and the Foundation of the
Inequality among Mankind, Jean-Jacques Rousseau ([1755] 1910, 167) establishes a distinc-
tion between two kinds of disparities: “I conceive two species of inequality among men;
one which I call natural, or physical inequality, because it is established by nature, and
consists in the difference of age, health, bodily strength, and the qualities of the mind,
or of the soul; the other which may be termed moral, or political inequality, because it
depends on a kind of convention, and is established, or at least authorized, by the com-
mon consent of mankind.” And he adds: “It were absurd to ask, what is the cause of
natural inequality, seeing the bare definition of natural inequality answers the question:
it would be more absurd still to enquire, if there might not be some essential connection
between the two species of inequality, as it would be asking, in other words, if those who
command are necessarily better men than those who obey; and if strength of body or of
mind, wisdom or virtue are always to be found in individuals, in the same proportion
with power, or riches: a question, fit perhaps to be discussed by slaves in the hearing of
their masters, but unbecoming free and reasonable beings in quest of truth.” Not only is
it ludicrous to investigate “natural inequality,” but it is also preposterous to attempt to
CONCLUSION
Confronting Kenneth Read’s view of ethics and Maurice Halbwachs’s approach of demo-
graphics raises important questions for contemporary societies. The affirmation of the
sacredness of life and the equality of human beings—which is indeed part of the modern
creed—can thus be put to the test of the reality of unequal lives, which contradicts both
principles, even in the domain where one would assume they are best defended (human-
itarianism) and in the country where they are allegedly foundational to the spirit of the
nation (the United States). Anthropologists have mostly left these questions to philoso-
phers, epidemiologists, and sociologists. There might be an intellectual and political
urgency to reconsider the anthropology of life from this perspective.
REFERENCES
Large variations in mortality rates arguably reflect one of the severest manifestations of
global inequities in the world today. If mortality numbers routinely released by the World
Health Organization (WHO) are taken at face value, in countries like Iceland, 56 of every
1,000 men and women will die between the ages of fifteen and sixty. In China that
number rises to 113 and in India closer to 213. In central and western Africa, these mor-
tality rates regularly exceed 300, and in many countries they are closer to 400. And in
HIV/AIDS-affected countries, the numbers rise to between 481 (Malawi) and 772 (Zim-
babwe). Starkly put, the risk of dying for adults in many countries in sub-Saharan Africa,
for instance, is higher than for those in the midst of conflict (such as that in Iraq [285] or
Afghanistan [479]).
This chapter uses mortality patterns over the life course of men and women as a lens
through which to examine gender inequality and health. At the heart of this chapter is a
worldwide historical exercise based on mortality patterns going as far back as data allow—
in some cases, like Sweden, to the mid–eighteenth century. These historical data have
been used extensively, for instance, to document the sharp and continuing decline in
overall mortality since the eighteenth century, a decline that has increased life spans by
thirty years just since 1900 (see Cutler, Deaton, and Lleras-Muney 2006). We construct
at every age the sex ratio of mortality or the ratio of the mortality rate for men and women,
for all countries with available data from the earliest date available. By the way it is defined,
the sex ratio of mortality, or SRM, will fall with a decline in female mortality (keeping
male mortality constant) and will rise with an increase in male mortality (keeping female
784
mortality constant). These data then allow us to examine historical patterns of mortality
transitions for men and women in today’s high-income countries and (potentially) com-
pare them with the recent experience of low- and middle-income countries.
We first document striking similarities in the historical evolution of the SRM for
today’s high-income countries. In the nineteenth century, women died at higher rates
than men between the ages of ten and forty, but at lower rates for the older ages. As the
nineteenth century came to a close, the decline in female mortality exceeded the decline
in male mortality. Throughout the twentieth century, the female advantage in mortality
continued to rise, and by the 1990s the SRM in many high-income countries had a
similar pattern: women enjoyed lower mortality rates throughout their lives, with the
differences particularly accentuated in late adolescence and the early twenties and then
again past the age of sixty. Between 1990 and 2010, there have been signs of an incipient
turnaround in male mortality, which appears to have decreased at a faster rate than female
mortality both in the late adolescent years and in the older years.
Two broad sets of hypotheses have been advanced for the observed evolution of the
SRM. One view, based on the spatial and occupational distribution of mortality, suggests
that female mortality rates were high in regions and occupations where the status of
women was low. Economic opportunities improved the status of women in society and
reduced mortality rates, more so for women than for men. Better nutrition is arguably
one channel through which higher status for women within the family translated into
decreased mortality (see Tabutin 1978; Ginsberg and Swedlund 1986; Kennedy 1973;
Johansson 1977; Humphries 1991). A second view, based on remarkable similarities
across countries in the timing of SRM changes, privileges the arrival of modern public
health in the form of clean water and sanitation systems, and later the rise of modern
medicine and the concomitant decline in maternal mortality, as driving forces in the
decline of female mortality (World Bank 2011). The two views are not mutually exclusive:
discrimination against women and their low status could have been dominant forces in
the nineteenth century when medicine was largely ineffectual and the germ theory of
disease was in its infancy. However, as public-health measures became part of the insti-
tutional landscape in high-income countries, the costs of discrimination could have
declined. Perhaps households still favored sons over daughters, but if the water that
came from the tap was clean, it didn’t matter whether you boiled it for the son and not
for the daughter. This line of argument mirrors the debate over the causes of overall
mortality decline and recognizes that individual-specific determinants (like nutrition)
were likely predominant in historical periods when medicine had little to contribute to
population health (Cutler, Deaton, and Lleras-Muney 2006).
The proximate determinants for mortality declines among men and women are
important for low-income countries today. With a wider understanding of both how
diseases propagate in populations and the link between basic public-health measures
and the health of a population, the institutional view offers an alternate path to reduc-
tions in mortality. There are tantalizing hints from studies based on a small number of
D ATA
For a number of countries that are today classified as having high-income economies,
gender-disaggregated mortality data are available as far back as the eighteenth century
through the Human Mortality Database (HMD). The database contains detailed popula-
tion and mortality data for thirty-seven countries or areas, including original calculations
of death rates and life tables for populations (countries or areas), and the input data used
in constructing those tables. The input data consist of death counts from vital statistics,
plus census counts, birth counts, and population estimates from various sources. The
database is limited by design to populations where death registration and census data are
virtually complete, since this type of information is required for the uniform method used
to reconstruct historical data series. As a result, the countries and areas included are
relatively wealthy and for the most part highly industrialized. The process for computing
mortality rates and life tables4 consists of six steps, corresponding to six data types that
are available from the HMD: births, deaths, population size, exposure to risk,5 death
rates,6 and life tables. All mortality data for high-income countries presented or used in
this chapter are extracted from the HMD.
Although the populations included in the HMD have a relatively high coverage of
census and vital registration systems, there is evidence of both age heaping7 and age
exaggeration in the data.8 (See the HMD at www.mortality.org.) The data have been cor-
rected for gross errors9 but not for systematic misreporting of age or over- or underenu-
meration of people or events (coverage errors). There is little information on the extent
of such coverage errors, since studies assessing the completeness of census coverage or
death registration in these countries do not exist. The misreporting of age is, in part, dealt
with by analyzing data in five-year age groups, but age exaggeration remains a problem.
Since age reporting in death-registration systems is typically more reliable than in census
counts or official population estimates, population estimates at older ages are derived
PAT T E R N S
The idea that women’s overall advantage in mortality—a higher life expectancy or lower
aggregate mortality rate compared with men—conceals a significant disadvantage in
mortality at certain age groups is not new. In 1885, William Farr, who initiated the col-
lection of vital statistics in England and Wales, showed that English girls and women died
at higher rates than English boys and men between the ages of ten and forty in the early
nineteenth century (Farr 1885). Further, between the ages of ten and twenty, about 5
percent more females died than males, and between thirty and forty, female mortality
E N G L A N D A N D WA L E S
The experience of England and Wales, where we have data as far back as 1845, is useful
to first show this broad pattern of transition in a single country. We then show that the
mortality experience of this population mirrors historical trends in many neighboring
European countries.
Figures 44.1a–b present the historical transition in the SRM for England and Wales.
In the first figure, figure 44.1a, we present the SRMs at each age between 1845 and 2005,
noting the high SRMs around the young-adult ages in the two war years—1915 and 1945.
Given significantly higher war casualties among men, it is difficult to discern changes in
the SRM outside these abnormal spikes. Therefore, in the second figure, figure 44.1b,
we truncate the war years’ SRM, allowing for finer variation in the non–war years to
emerge more clearly.
During the nineteenth century, these life tables estimate 1.2 male deaths for each
female death during the first year of life. After that, the SRM declines with age as the
male disadvantage in mortality diminishes, deviating from equality most significantly
between the ages of fifteen and twenty and between twenty-five and thirty-five, reaching
as high as 1.25 female deaths for each male death. The female advantage in mortality at
birth erodes through early childhood and adulthood, leading to excess female mortality at
these ages.11 Thereafter, the SRM rises, peaks around the fifty-to-fifty-five-year age group,
and hovers between 1 and 1.2 male deaths for every female death.
Through the century, this pattern in the age structure of mortality shifted fundamen-
tally, with increasing SRMs giving rise to a reversal in excess female mortality. Between
1845 and 1905, age-specific female mortality between the ages of five and thirty-five
declined faster than male mortality. These shifts in the SRM continued through the
twentieth century. By 1925, excess female mortality had completely disappeared in Eng-
land and Wales, and age-specific SRMs continued to rise, leading to a two-peaked age
profile of SRM, with peaks between fifteen and twenty-five years and between fifty-five
and seventy years by 1955. The SRM at the former age group (a peak of roughly three
male deaths for each female death) was higher than that at the latter (a peak of roughly
two deaths per female death). This pattern—of excess male mortality concentrated
among young adults and at the older ages—persisted through the latter half of the cen-
tury. Finally, between 1990 and 2010, age-specific SRMs declined significantly at the
older ages, but the peak in SRM among young adults persisted.
The fundamental feature of the mortality transition in England and Wales was thus a
faster reduction in female relative to male mortality through the nineteenth and twentieth
centuries. Excess female mortality observed in early childhood through to adulthood in the
early nineteenth century declined consistently through the twentieth century, disappearing
5 5 5
0
0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70
1875 1885 1895
10 10 10
5 5 5
0
0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70
1905 1915 1925
10 10 10
5 5 5
0
0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70
1935 1945 1955
10 10 10
5 5 5
0
0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70
1965 1975 1985
10 10 10
5 5 5
0
0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70
1995 2005
10 10
5 5
0
0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70
figure 44.1a
Historical sex ratios of mortality in England and Wales, 1845–2005. The vertical axis represents sex
ratio of mortality; the horizontal axis, age.
source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of
California, Berkeley.
notes: Plots of SRM (sex ratios of mortality; male mortality rate divided by the female mortality rate) against age in
England and Wales every ten years during 1845–2005. While a gradual rise in sex mortality ratios is clearly visible at
all ages in 1935 and after, the spikes in SRM in the World War years (1915 and 1945) dwarf the relatively smaller
increases over time. Figure 44.1b corrects for this by presenting the same data but suppressing the SRM peaks at the
young-adult ages for these two years.
1845 1855 1865
3 3 3
2.5 2.5 2.5
2 2 2
1.5 1.5 1.5
1 1 1
0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70
1875 1885 1895
3 3 3
2.5 2.5 2.5
2 2 2
1.5 1.5 1.5
1 1 1
0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70
1905 1915 1925
3 3 3
2.5 2.5 2.5
2 2 2
1.5 1.5 1.5
1 1 1
0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70
1935 1945 1955
3 3 3
2.5 2.5 2.5
2 2 2
1.5 1.5 1.5
1 1 1
0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70
1965 1975 1985
3 3 3
2.5 2.5 2.5
2 2 2
1.5 1.5 1.5
1 1 1
0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70
1995 2005
3 3
2.5 2.5
2 2
1.5 1.5
1 1
0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70
figure 44.1b
Historical sex ratios of mortality in England and Wales, 1845–2005. World War effects truncated for
years 1915 and 1945. The vertical axis represents sex ratio of mortality; the horizontal axis, age.
source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of
California, Berkeley.
notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) against age in England
and Wales every ten years during 1845–2005. These plots present the same information as in figure 44.1b, except that
the sex mortality ratios at young-adult ages during the two World Wars (the years 1915 and 1945 here) are suppressed.
Note the disappearance of excess female mortality by the beginning of the twentieth century, and sex ratios rising
dramatically through the 1900s, even outside of wartime. Excess male mortality becomes concentrated in adolescence
and young adulthood, and among the elderly.
completely by the middle of the century. Through the latter half of the twentieth century,
female mortality continued to decline faster than male mortality, and SRMs rose to produce
a two-peaked profile, with excess male mortality concentrated among young adults and the
elderly. More recently, age-specific SRMs declined somewhat at all ages (contrast, for
instance, 1995 and 2005), but the “two-peaked” age profile persists to date.
T H E D E C L I N E O F E XC E S S F E M A L E M O RTA L I T Y F R O M 1 8 0 0 T O
1950 IN MANY RICH COUNTRIES
Mortality data extracted from the Human Mortality Database (HMD) allow construction
of a long series of age-specific mortality rates for twelve of today’s high-income countries,
dating back to the 1800s. During the nineteenth century, the age profiles of the SRM
looked remarkably similar across this set of countries, reflecting features that broadly
resemble those described above for England and Wales. Figures 44.2a–d illustrate this
for Belgium, France, and Sweden, in addition to England and Wales. For the first year of
life, life tables estimate 1.2 male deaths for each female death in every country. After that,
age-specific SRM declines with age and exhibits a double-trough pattern, with the first
trough in SRM between the ages of ten and fifteen or between fifteen and twenty, depend-
ing on the country. The SRM then rises above 1 before falling again to produce a second
trough between the ages of twenty-five and thirty and between thirty and thirty-five.
Thereafter, the SRM rises, peaks in some instances around the fifty-to-fifty-five-year age
group, and generally hovers between 1 and 1.2 male deaths for every female death.
Thus, each of the twelve European countries for which long mortality series are avail-
able in the HMD exhibited excess female mortality through the 1800s and early 1900s,
notably during early childhood12 and young adulthood (the reproductive years of peak
fertility and just after). However, this excess female mortality was not a static feature of
these mortality profiles; as with England and Wales, excess female mortality diminished
over time in each country and completely disappeared between 1900 and 1930, with sex
ratios of mortality rising above 1 at every age. (See figures 44.3a–b and 44.4a–b.)13
Within this group of twelve countries, consider the experience of Belgium, Denmark,
France, Italy, Netherlands, and Spain. Each had sex ratios of mortality in childhood and
young adulthood consistently lower than 1 for extended periods of time before the start
of the nineteenth century. The SRMs at these ages then rose through the early 1900s,
and excess female mortality disappeared by 1930.
The remaining six countries or areas with time-series data representing a long period—
England and Wales, Finland, Norway, Scotland, Sweden, and Switzerland—experienced
fluctuation in excess female mortality, with SRMs fluctuating above and below 1 before
1900. Excess female mortality appeared and disappeared during the 1800s, always appear-
ing at the childhood and adult years. Norway and Sweden were the only countries that did
not exhibit significant levels of excess female mortality outside of childhood. As with the
first set of countries, SRMs rose at every age through the 1900s, and between 1900 and
1930 excess female mortality had completely disappeared in these countries.
3
1820 1925
1850 1950
1875 1975
1900
2.5
Sex ratio of mortality
1.5
0 10 20 30 40 50 60 70
Age
Sweden
3.5 1820
1850
1875
1900
3 1925
1950
1975
Sex ratio of mortality
2.5
1.5
0 10 20 30 40 50 60 70
Age
figure 44.2a–d
Historical sex ratios of mortality in four European countries, 1820–1975.
source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of
California, Berkeley.
Belgium
3
1850
1875
1900
1925
2.5
1950
1975
Sex ratio of mortality
1.5
.5
0 10 20 30 40 50 60 70
Age
2.5
1850
1875
1900
1925
1950
1975
2
Sex ratio of mortality
1.5
0 10 20 30 40 50 60 70
Age
notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) against age in France,
Sweden, Belgium, and England and Wales every 25 years between 1820 and 1975. Sex ratios of mortality in France,
Belgium, and Sweden evolved in ways that closely resemble the experience of England and Wales: excess female
mortality in these countries disappears by the twentieth century, and sex ratios of mortality rise at all ages through the
1900s to produce a two-peaked profile in every country.
Australia Austria Belgium
2.5 2.5 2.5
2 2 2
1.5 1.5 1.5
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Canada Denmark England & Wales
2.5 2.5 2.5
2 2 2
1.5 1.5 1.5
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Finland France Ireland
2.5 2.5 2.5
2 2 2
1.5 1.5 1.5
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Italy Japan Netherlands
2.5 2.5 2.5
2 2 2
1.5 1.5 1.5
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
New Zealand Norway Portugal
2.5 2.5 2.5
2 2 2
1.5 1.5 1.5
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Scotland Spain Sweden
2.5 2.5 2.5
2 2 2
1.5 1.5 1.5
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Switzerland United States
2.5 2.5
2 2
1.5 1.5
1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
figure 44.3a
Historical sex ratios of mortality in 20 high-income countries, 1720–1950, in the 5–9 year age group.
The vertical axis represents sex ratio of mortality; the horizontal axis, year.
source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of
California, Berkeley.
notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in the 5–9 year age
group between 1720 and 1950 in 20 high-income countries. SRM data are missing for early years in countries whose
mortality data series start later than 1720. Sex mortality ratios during the two World Wars are suppressed. These plots
(along with those in fig. 44.3b) zoom in on the mortality experience of older children/adolescents in high-income
countries, and show how excess female mortality at these ages declined and gave way to excess male mortality.
Australia Austria Belgium
2 2 2
1 1 1
.5 .5 .5
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Canada Denmark England & Wales
2 2 2
1.5 1.5
1 1 1
.5 .5 .5
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Finland France Ireland
2 2 2
1.5 1.5
1 1 1
.5 .5 .5
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Italy Japan Netherlands
2 2 2
1 1 1
.5 .5 .5
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
New Zealand Norway Portugal
2 2 2
1 1 1
.5 .5 .5
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Scotland Spain Sweden
2 2 2
1 1 1
.5 .5 .5
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Switzerland United States
2 2
1.5 1.5
1 1
.5 .5
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
figure 44.3b
Historical sex ratios of mortality in 20 high-income countries, 1720–1950, in the 10–14 year age group.
The vertical axis represents sex ratio of mortality; the horizontal axis, year.
source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of
California, Berkeley.
notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in the 10–14 year age
group between 1720 and 1950 in 20 high-income countries. SRM data are missing for early years in countries whose
mortality data series start later than 1720. Sex mortality ratios during the two World Wars are suppressed. These plots
(along with those in fig. 44.3a) zoom in on the mortality experience of older children/adolescents in high-income
countries, and show how excess female mortality at these ages declined and gave way to excess male mortality.
Australia Austria Belgium
4 4 4
3 3 3
2 2 2
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Canada Denmark England & Wales
4 4 4
3 3 3
2 2 2
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Finland France Ireland
4 4 4
3 3 3
2 2 2
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Italy Japan Netherlands
4 4 4
3 3 3
2 2 2
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
New Zealand Norway Portugal
4 4 4
3 3 3
2 2 2
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Scotland Spain Sweden
4 4 4
3 3 3
2 2 2
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Switzerland United States
4 4
3 3
2 2
1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
figure 44.4a
Historical sex ratios of mortality in 20 high-income countries, 1720–1950, in the 25–29 year age group.
The vertical axis represents sex ratio of mortality; the horizontal axis, year.
source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of
California, Berkeley.
notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in the 25–29 year age
group between 1720 and 1950 in 20 high-income countries. SRM data are missing for early years in countries whose
mortality data series start later than 1720. Sex mortality ratios during the two World Wars are suppressed. These plots
(along with those in figure 44.4b) highlight the mortality experience of adults in high-income countries, and show
how excess female mortality at these ages declined and gave way to excess male mortality.
Australia Austria Belgium
4 4 4
3 3 3
2 2 2
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Canada Denmark England & Wales
4 4 4
3 3 3
2 2 2
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Finland France Ireland
4 4 4
3 3 3
2 2 2
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Italy Japan Netherlands
4 4 4
3 3 3
2 2 2
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
New Zealand Norway Portugal
4 4 4
3 3 3
2 2 2
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Scotland Spain Sweden
4 4 4
3 3 3
2 2 2
1 1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Switzerland United States
4 4
3 3
2 2
1 1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
figure 44.4b
Historical sex ratios of mortality in 20 high-income countries, 1720–1950, in the 30–34 year age group.
The vertical axis represents sex ratio of mortality; the horizontal axis, year.
source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of
California, Berkeley.
notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in the 30–34 year age
group between 1720 and 1950 in 20 high-income countries. SRM data are missing for early years in countries whose
mortality data series start later than 1720. Sex mortality ratios during the two World Wars are suppressed. These plots
(along with those in fig. 44.4a) zoom in on the mortality experience of adults in high-income countries, and show how
excess female mortality at these ages declined and gave way to excess male mortality.
15–20 years 20–25 years
8
4
Sex ratio of mortality, 1950
2
0
0 .5 1 1.5 2 0 .5 1 1.5 2
Sex ratio of mortality, 1925
figure 44.5a
Sex ratios of mortality in 21 high-income countries by age group during 1925–1950. The solid line
represents no change in SRMs over time.
source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of
California, Berkeley.
notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in 1950 against those
in 1925, for young adults (age groups 15–20 and 20–25) and older adults (age groups 55–60 and 60–65) in 21 high-
income countries. The solid line is the line of equality; if a data point falls on this line, the sex ratio of mortality in the
corresponding country and age group did not change between 1925 and 1950. All data points fall above the line and
indicate that sex ratios of mortality among both young and older adults increased across all countries in the sample
during this period. Countries included are Australia, Austria, Belgium, Canada, Denmark, Finland, France, Iceland,
Ireland, Italy, Japan, Luxembourg, Netherlands, New Zealand, Norway, Portugal, Spain, Sweden, Switzerland, the
United Kingdom, and the United States.
For some advanced economies, the HMD series start during the twentieth century
(1920 or later). This includes Australia, Austria, Canada, Japan, New Zealand, Portugal,
and the United States. During this period of observation, sex-disaggregated mortality
rates in these countries do not exhibit higher female mortality rates at the childhood
ages. The same is true of mortality at the adult ages. The only exception is for Australia
and Canada, both of which exhibit SRMs lower than 1 in the twenty-five to thirty-year
and thirty–to thirty-five-year age groups, but once again, by 1950 each of these has risen
above 1.
Excess female mortality was thus a prominent feature of the historical mortality pro-
files of today’s high-income countries. Although it appeared and disappeared at some-
what different times across these countries, the excess mortality among females, while
it lasted, was most concentrated during early childhood and the adult years, just past the
age of peak fertility. At older ages, a relative male disadvantage was always present, dating
back to data from 1820 in Sweden.
4
Iceland
Sex ratio of mortality, 1975
2
Sweden
0
2
Iceland
0
0 2 4 6 8 0 2 4 6 8
Sex ratio of mortality, 1950
figure 44.5b
Sex ratios of mortality in 21 high-income countries by age group during 1950–1975. The solid line
represents no change in SRMs over time.
source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of
California, Berkeley.
notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in 1975 against those in
1950, for young adults (age groups 15–20 and 20–25) and older adults (age groups 55–60 and 60–65) in 21 high-
income countries. The solid line is the line of equality; if a data point falls on this line, the sex ratio of mortality in the
corresponding country and age group did not change between 1950 and 1975. All data points fall above the line (except
for Iceland) and indicate that sex ratios of mortality among both young and older adults increased across all countries
in the sample during this period. Countries included are Australia, Austria, Belgium, Canada, Denmark, Finland,
France, Iceland, Ireland, Italy, Japan, Luxembourg, Netherlands, New Zealand, Norway, Portugal, Spain, Sweden,
Switzerland, the United Kingdom, and the United States.
T H E 1 950 S A N D L AT E R : A G R O W I N G M A L E D I S A D VA N TA G E
During the twentieth century, any female disadvantage in mortality further declined in
the group of high-income countries, and age-specific SRMs continued to rise. Figures
44.2a–d again show this for Belgium, France, England and Wales, and Sweden. By 1950,
excess female mortality not only disappeared in these countries but gave way to excess
male mortality at all ages. Moreover, between 1950 and 1975, SRMs developed a persistent
two-peaked age profile across the four countries, with the SRM peaking at between fifteen
and twenty-five years and then again between fifty-five and seventy years. The SRM at
the former age group (a peak of roughly 3 male deaths for each female death) was always
higher than that at the latter (a peak of roughly 2 deaths per female death). This double-
peak profile was characteristic of these four countries, but it was also experienced at this
time by each of the countries in the high-income group examined in the HMD.
Figures 44.5a–b examine further the age-specific SRMs at those ages where the SRM
1 9 9 0 –2 0 1 2 : A R E L AT I V E I M P R O V E M E N T I N M A L E M O RTA L I T Y
Between 1990 and 2010, the picture started to change. While the two-peaked age profile,
indicating a concentration of excess male mortality at the young-adult and old ages, proved
to be stubborn and persisted in practically every country between 1990 and 2010,
age-specific SRM did decline in most countries. This relatively recent decline occurred
differently across high-income countries, in terms of both its timing and the age groups
at which it occurred.
First, declines in age-specific SRMs, when they occurred, were greater at earlier ages
(fifteen to twenty-five and up to thirty) than at older ages (fifty to seventy). Second,
declines in age-specific SRM occurred differently across countries. Figures 44.6a–b show
the variety of experiences, again documenting the SRM in 1990 and 2007–11 at the age
groups with the highest SRMs. (As before, the line in each figure shows where countries
would fall if there was no change.) The age-specific SRM at age groups fifteen to twenty
and twenty to twenty-five declined significantly in most high-income countries. Ireland
was the notable exception, where the SRM increased at the young-adult ages. Declines
were particularly large in Portugal (from a peak of 4.4 in 2000 to 2.6 in 2009), Spain
(from 3.5 in 1990 to 2.5 in 2009), and Sweden (from 3 in 2000 to 2.5 in 2011). In Bel-
gium, Finland, Italy, and Switzerland, the SRM remained more or less unchanged.
Declines in SRM and a relative improvement in male mortality were also evident
among older adults during this period. Surprisingly, Spain and Portugal, which had
experienced declines in SRM at the younger ages, were exceptions, with small increases
in SRM at the older ages. Iceland also experienced a significant increase in SRM in
the fifty-five-to-fifty-nine-year age group, and Japan in the sixty-to-sixty-four-year age
group. Outside these countries, the magnitude of declines varied. Countries with rela-
tively larger declines were the western European and Nordic countries (France, Austria,
Belgium, Switzerland, Luxembourg, Norway, Sweden, Finland, and the Netherlands).
WHY?
TO D AY ’ S L O W- I N C O M E C O U N T R I E S : T H E U N C E RTA I N T Y
O F T H E D ATA
The vast literature documenting a “female deficit” in the low-income world, particularly
in southern and eastern Asia, has primarily relied upon the ratio of men to women
in these populations to infer the existence of a female disadvantage in mortality. Yet,
as Siwan Anderson and Debraj Ray (2010) point out, such comparisons can confound
historical differences with current differentials: the census data offer a measure of
population stocks that have been subject to flow mortality rates over a (potentially) long
period of time.
Studies comparing mortality rates among men and women at different ages are
rare. Dominique Tabutin (1992) undertakes this exercise for four countries in northern
Africa (Algeria, Egypt, Tunisia, and Morocco) over the period from 1965 to the late
1980s. He compiles mortality data for these countries from a variety of sources that
include civil registration systems, surveys, and official sources like the UN, and docu-
ments the existence of excess female mortality in northern Africa at the beginning of
this period, and its subsequent decline and concentration in the under-five age group.
M. A. el-Badry (1969) also compares gender-disaggregated age-specific mortality rates
using a combination of sources, and reports excess female mortality in India, what was
then Ceylon (now Sri Lanka), and Pakistan during the 1950s and 1960s, and docu-
ments declines over time in Sri Lanka.
Needless to say, studies like these are rare and hard to conduct due to lack of data:
unlike the group of high-income countries today for which uninterrupted gender-
disaggregated mortality estimates are available as far back as the 1700s from registration
systems, vital statistics, and census data, mortality data from other parts of the world are
sparse, and where they exist, they are available for recent decades only. The primary data
source on mortality that claims to allow a comparison of mortality rates across countries
and years is data from the WHO, which has constructed life tables for its member states
for the years 1990, 2000, and 2009/2011.
In 2012, when the data for this chapter were first accessed, age-specific mortality rates
for males and females were available through WHO life tables constructed for the years
1.9
1.5
1.3
1.1
0.9
0.7
0.5
0 5 15 25 35 45 55 65 75 85 95
Age
figure 44.7a–c
Sex ratios of mortality in China, using both the older release of the data from 2012 and the new release
from 2013, for the years 1990 (a), 2000 (b), and 2009 and 2011 (c).
source: Authors’ calculations based on data from the World Health Organization 2012, and the Global Health
Observatory, World Health Organization, 2013.
notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) against age for China. The
data for 1990, 2000, and 2009 were accessed in October 2012 and are presented here as “old data.” The WHO subse-
quently revised the 1990 and 2000 data and published new data for 2011. These were accessed in June 2013 and are
presented here as “new data.” Note the strikingly different patterns of gender differences in mortality between the old
and the revised data. In the new data, there is no instance of excess female mortality at any age across the entire period of
observation. Also, the two-peaked profile of SRM—similar to that observed in high-income countries—with the male
disadvantage concentrated at the young adult and older ages has disappeared.
1990, 2000, and 2009. In the 2013 release of the data, estimates for the years 1990 and
2000 were revised, and new estimates were published for the year 2011. For some coun-
tries, the revised 2013 estimates differed significantly from those published in 2012, with
significant changes in sex-specific mortality risks for the years 1990 and 2000. As a
result of these changes, trends in male and female mortality rates between the years
1990 and 2000 estimated using the 2012 version of the data were different for these
countries from those estimated using the 2013 data. These differences in turn implied
that changes in sex differences in mortality rates over time look significantly different
depending on the version of data used.
Figures 44.7a–c present sex ratios of mortality in China, using the 2012 and 2013
releases of the mortality data. The pattern of gender differences in mortality is strikingly
different in the two versions of the data. The older data exhibit excess female mortality
at ages ten and below in 1990, which remains only during the first year of life by 2009.
The profile at all ages above this closely resembles that observed in modern times in the
1.7
1.5
1.3
1.1
0.9
0.7
0.5
0 5 15 25 35 45 55 65 75 85 95
Age
China
2.5
2.3
2011-new data
2.1 2009-old data
1.9
Sex ratio of mortality
1.7
1.5
1.3
1.1
0.9
0.7
0.5
0 5 15 25 35 45 55 65 75 85 95
Age
high-income world—rising sex ratios of mortality in the past two decades, with excess
male mortality concentrated in adolescence and again in the older ages. In the newly
released data, however, mortality risks are much more “equitable,” especially at the
youngest ages. There is no excess female mortality at any age during the entire period of
observation. The age profile of sex ratios of mortality is fairly flat, with no concentration
of relative male disadvantage at specific ages comparable to that observed in the older
data. Age-specific SRM hovers between 1 and 1.5, generally increasing between 1990 and
2000, and declining somewhat by 2011.
For India, the differences between the 2012 and 2013 versions of the data are not as
1.1
0.9
0.7
0.5
0 5 15 25 35 45 55 65 75 85 95
Age
figure 44.8a–c
Sex ratios of mortality in India, using both the older release of the data from 2012 and the new release
from 2013 for the years 1990 (a), 2000 (b), and 2009 and 2011 (c).
source: Authors’ calculations based on data from the World Health Organization 2012 and the Global Health
Observatory, World Health Organization, 2013.
notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) against age for India.
The data for 1990, 2000, and 2009 were accessed in October 2012 and are presented here as “old data.” The WHO
subsequently revised the 1990 and 2000 data and published new data for 2011. These were accessed in June 2013 and
are presented here as “new data.” In comparison to China, the differences between the old and revised data are much
smaller in India. The age group five years and under is the only exception: it exhibited a higher magnitude of female
disadvantage in the old version of the data.
dramatic. (See figures 44.8a–c.) There is little or no difference between the revised mor-
tality estimates for the years 1990 and 2000. The only exception is risks under the age
of five. The older version of the data exhibits a significantly higher level of excess female
mortality in 1990 and 2000. Both the revised estimates and earlier data tell a similar
story of a relative female disadvantage in mortality up to the age of thirty, which signifi-
cantly reduced in the last decade, and steadily rising male-biased sex ratios of mortality
at all higher ages.
In the 2012 data release, the sex structure of mortality risks in 1990 in Tanzania closely
resembles that observed in the higher-income European countries in the late 1800s. Fig-
ures 44.9a–c illustrate this: the sex mortality ratio after the first year of life up to the
twenty-five-to-thirty-year age group is significantly lower than 1, indicating excess female
mortality. By 2000, the age profile of sex ratios of mortality has shifted upward, and excess
female mortality is visible only in early childhood (one to four years) and again between
the ages of twenty and thirty-five. By 2009, excess female mortality has disappeared at all
ages except in the one-to-four-year age group, and the sex structure of mortality closely
1.1
0.9
0.7
0.5
0 5 15 25 35 45 55 65 75 85 95
Age
India
2.1
2011-new data
1.9 2009-old data
1.7
Sex ratio of mortality
1.5
1.3
1.1
0.9
0.7
0.5
0 5 15 25 35 45 55 65 75 85 95
Age
1.1
0.9
0.7
0.5
0 5 15 25 35 45 55 65 75 85 95
Age
figure 44.9a–c
Sex ratios of mortality in Tanzania, using both the older release of the data from 2012 and the new
release from 2013 for the years 1990 (a), 2000 (b), and 2009 and 2011 (c).
source: Authors’ calculations based on data from the World Health Organization 2012 and the Global Health
Observatory, World Health Organization, 2013.
notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) against age for
Tanzania. The data for 1990, 2000, and 2009 were accessed in October 2012 and are presented here as “old data.”
The WHO subsequently revised the 1990 and 2000 data and published new data for 2011. These were accessed in
June 2013 and are presented here as “new data.” In the revised data, there is no excess female mortality in Tanzania in
1990 at any age, but it is present in early adulthood by the year 2000 in both releases of the data.
E X P L A N AT I O N S — H O W T H E U N D E R LY I N G M A L E A N D F E M A L E
M O RTA L I T Y E S T I M AT E S C H A N G E D
A comparison of mortality risks among males and females explains why the sex structure
of mortality is strikingly different in the new and old versions of the WHO data. Consider
the case of mortality estimates for the year 1990 for three countries: China, India, and
Tanzania.15
In the old data for China, male mortality under the age of five in 1990 is somewhat
lower than female mortality at the same age. (See figures 44.10a–d.) Hence we see excess
female mortality at this age. In the revised data, male mortality under the age of five is
significantly higher than that in the earlier data, while female mortality is lower—indeed,
lower not just than its value in the 2012 data, but even lower than the revised level of
male mortality. As a result, we don’t see any excess female mortality in childhood.
It is worth highlighting that the precision required to construct accurate SRMs is very
high. Because mortality rates are small numbers, and become very small above the age
of five, the SRM is the ratio of two very small numbers. Small changes in either the male
or the female mortality rates could lead to large changes in the SRM, depending on the
1.7
Sex ratio of mortality
1.5
1.3
1.1
0.9
0.7
0.5
0 5 15 25 35 45 55 65 75 85 95
Age
Tanzania
2.5
1.9
Sex ratio of mortality
1.7
1.5
1.3
1.1
0.9
0.7
0.5
0 5 15 25 35 45 55 65 75 85 95
Age
direction of the change. For instance, in the Chinese case as seen earlier, at the older ages
(figures 44.7a–c and 44.10c–d), the revised mortality risks do not show the two-peaked
age profile of sex ratios of mortality visible in the old data. In the old data, the first peak
in SRM was centered at twenty to twenty-five years. Why do we see this? In the new data
(figures 44.10c–d), the male mortality rates in and around this age group (0.00124) are
significantly lower than those in the old data (0.00179), while female mortality risks in
this age group were revised downward by a smaller amount (0.00100, versus 0.00114 in
the old). The new SRM (1.24) is thus significantly lower than that observed in the old data
(1.57). The second peak in the SRM, centered at sixty to sixty-five years, also disappears
because the revised estimates for male mortality in this age range are somewhat lower
(and for female mortality, slightly higher) than the earlier estimates.
0 0
0 1 5 10 15 20 25 30 35 40 0 1 5 10 15 20 25 30 35 40
.7 .6
.1 .1
0 0
45 50 55 60 65 70 75 80 85 90 95 100 45 50 55 60 65 70 75 80 85 90 95 100
Age
figure 44.10a–d
Age-specific mortality rates in China, 1990, using both the older release of the data from 2012 and the
new release from 2013 for males (a) and females (b) aged 0–44, and for males (c) and females (d) aged
45–100.
source: World Health Organization 2012, and the Global Health Observatory, World Health Organization, 2013.
notes: Plots of mortality rates among younger (0–44 years) and older (45 years and above) males and females in
China against age. The data for year 1990 were accessed in October 2012 and are presented here as “old data.” The
WHO subsequently revised these data. These were accessed in June 2013 and are presented here as “new data.” The
2013 release of the data revised childhood male mortality in 1990 upward and female mortality downward, so that
excess female mortality is no longer present in this age group. At the older ages (consider age groups 20–24 and
60–64), both male and female mortality were revised downward, but since female mortality was revised by a smaller
amount, the SRM was significantly lower, and the two-peaked SRM profile observed in the old data flattened out
considerably in the new data.
For India, the differences in the old and revised estimates for 1990 were mainly vis-
ible at age five and under. (See figures 44.11a–b.) Focus on the age group one to four
years, since this is the age group with the largest deviation. In the 2013 release of the
data, male mortality is higher than its value previously estimated. Female mortality, on
the other hand, is lower. This results in a higher value of the sex mortality ratio at this
age in the new release of the data.
.07
.06
.05
.04
.03
.02
.01
Mortality Rate
0
0 1 5 10 15 2 25 30 35 40 45 50 55 60 65 70
.1
.07
.06
.05
.04
.03
.02
.01
0
0 1 5 10 15 2 25 30 35 40 45 50 55 60 65 70
Age
figure 44.11a–b
Age-specific mortality rates in India, 1990, using both the older release of the data from 2012 and the
new release from 2013 for males (a) and females (b) aged 0–74.
source: World Health Organization 2012, and the Global Health Observatory, World Health Organization, 2013.
notes: Plots of mortality rates among males and females in India against age. The data for year 1990 were accessed in
October 2012 and are presented here as “old data.” The WHO subsequently revised these data. These were accessed in
June 2013 and are presented here as “new data.” The 2013 release of the data revised the 1990 childhood male mortal-
ity upward and female mortality downward, so that SRM in this age group is higher in the new data.
For Tanzania, the most dramatic difference is that the data in the 2012 release exhib-
ited significant levels of excess female mortality after the first year of life up to the age of
thirty, while in the 2013 release there is no excess female mortality through the life
course. Different things happened at different ages. (See figures 44.12a–b.) In the one-
to-four-year age group, female mortality was revised downward (0.01940 to 0.01694)
.08 .08
Mortality Rate
.06 .06
.04 .04
.02 .02
0 0
0 1 5 10 15 20 25 30 0 1 5 10 15 20 25 30
Age
figure 44.12a–b
Age-specific mortality rates in Tanzania, 1990, using both the older release of the data from 2012 and
the new release from 2013 for males (a) and females (b) aged 0–34.
source: World Health Organization 2012 and the Global Health Observatory, World Health Organization, 2013.
notes: Plots of mortality rates among males and females in Tanzania against age. The data for year 1990 were
accessed in October 2012 and are presented here as “old data.” The WHO subsequently revised these data. These were
accessed in June 2013 and are presented here as “new data.” In the new data, the 1990 childhood male mortality was
revised upward while female mortality was revised downward. At higher ages, both male and female mortality were
revised upward, but the revision for male mortality was larger. The combined result was a higher SRM (and elimina-
tion of excess female mortality) at these ages in the new data for 1990.
while male mortality was revised upward (0.01697 to 0.01837); the changes were big
enough to reverse the disadvantage and raise the sex mortality ratio above 1. At age five
and above, both male and female mortality were revised upward: for example, in the
fifteen-to-nineteen-year age group, male mortality was revised from 0.00173 to 0.00429,
and 0.00252 to 0.00393 for females. Since the revision in male mortality was larger than
that in female mortality, the change was once again large enough to flip the disadvantage
to males, with the SRM rising from 0.69 to 1.09.
W H AT T H E S E C H A N G E S M E A N F O R T H E A N A LYS I S O F G E N D E R
D I F F E R E N C E S I N M O RTA L I T Y I N L O W E R - I N C O M E C O U N T R I E S
CONCLUSION
In today’s rich countries, relative mortality for men and women evolved in remarkably
similar ways. A historical disadvantage for women till the age of forty and a historical
advantage thereafter gave way to a female advantage in mortality for all ages by the early
twentieth century. The record of the twentieth century shows increasing female advantages
and the arrival of a two-peaked distribution of the sex ratio of mortality. It is only around
1990 that we see an incipient change in favor of men, with a slow decline in the peaks in
some countries. Like discussions around the overall mortality transition, the proximate
determinants for this evolutionary pattern likely differed over time. It is possible that the
early female disadvantage, at a time when medical technology was largely ineffective,
reflected the low status of women in society. Yet, with the arrival of the germ theory of
disease and large public-health campaigns around clean water and sanitation at the turn
of the century, a reduction in infectious diseases could have impacted female more than
male mortality—even in societies where discrimination against women continued.
These debates are important for low-income countries today, and studies based on a
small number of countries from various data sources do suggest that a similar evolution
is under way in these countries. If so, it is the dramatic failure to provide better public-
health measures that could be driving the pattern of mortality rates across men and
women. Examining this hypothesis in a large number of countries runs into severe data
issues: despite attempts by the World Health Organization to compile mortality data by
age and sex, there are large uncertainties. Depending on which version of these data is
used, different stories can be told. It is arguably prudent, as this stage, to focus our efforts
on improving the quality of vital statistics in low-income countries rather than on analyz-
ing data that are inherently unreliable.
NOTES
This chapter draws on previous work by the authors for the 2012 World Development Report.
We thank Clara Han, Veena Das, and Monica Das Gupta for comments and conversations. It
was funded, in part, through grants from the KCP trust funds at the World Bank. The findings,
interpretations, and conclusions expressed in this paper are entirely those of the authors. They
do not necessarily reflect the view of the World Bank, its executive directors, or the countries
they represent.
1. Data accessed prior to March 2013—and used in the 2012 World Development Report
(World Bank 2011)—suggest that in high-HIV-prevalence countries like Botswana, Kenya, and
Uganda, between 1990 and 2000, the sex ratio of mortality (henceforth SRM) decreased sharply
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Canada Denmark England & Wales
1.5 1.5 1.5
1.4 1.4 1.4
1.3 1.3 1.3
1.2 1.2 1.2
1.1 1.1 1.1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Finland France Ireland
1.5 1.5 1.5
1.4 1.4 1.4
1.3 1.3 1.3
1.2 1.2 1.2
1.1 1.1 1.1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Italy Japan Netherlands
1.5 1.5 1.5
1.4 1.4 1.4
1.3 1.3 1.3
1.2 1.2 1.2
1.1 1.1 1.1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
New Zealand Northern Ireland Norway
1.5 1.5 1.5
1.4 1.4 1.4
1.3 1.3 1.3
1.2 1.2 1.2
1.1 1.1 1.1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Portugal Scotland Spain
1.5 1.5 1.5
1.4 1.4 1.4
1.3 1.3 1.3
1.2 1.2 1.2
1.1 1.1 1.1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Sweden Switzerland United Kingdom
1.5 1.5 1.5
1.4 1.4 1.4
1.3 1.3 1.3
1.2 1.2 1.2
1.1 1.1 1.1
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
United States
1.5
1.4
1.3
1.2
1.1
figure 44.13a
Historical sex ratios of mortality in 22 high-income countries, 1720–1950, in the 0–1 year age group.
source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of
California, Berkeley.
notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in the 0–1 year age group
between 1720 and 1950 in 22 high-income countries. SRM data are missing for early years in countries whose mortality
data series start later than 1720. Sex mortality ratios during the two World Wars are suppressed. These plots (along with
those in figure 44.13b) zoom in on the mortality experience of infants and young children in high-income countries, and
show how at these ages mortality profiles of these countries always exhibit a male disadvantage in mortality, unlike at
older ages, where excess female mortality persisted for a long time before giving way to excess male mortality.
Australia Austria Belgium
1.4 1.4 1.4
1 1 1
.8 .8 .8
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Canada Denmark England & Wales
1.4 1.4 1.4
1 1 1
.8 .8 .8
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Finland France Ireland
1.4 1.4 1.4
1 1 1
.8 .8 .8
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Italy Japan Netherlands
1.4 1.4 1.4
1 1 1
.8 .8 .8
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
New Zealand Northern Ireland Norway
1.4 1.4 1.4
1 1 1
.8 .8 .8
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Portugal Scotland Spain
1.4 1.4 1.4
1 1 1
.8 .8 .8
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
Sweden Switzerland United Kingdom
1.4 1.4 1.4
1 1 1
.8 .8 .8
1750 1800 1850 1900 1950 1750 1800 1850 1900 1950 1750 1800 1850 1900 1950
United States
1.4
1.2
.8
1750 1800 1850 1900 1950
figure 44.13b
Historical sex ratios of mortality in 22 high-income countries, 1720–1950, in the 1–4 year age group.
source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of
California, Berkeley.
notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in the 1–4 year age group
between 1720 and 1950 in 22 high-income countries. SRM data are missing for early years in countries whose mortality
data series start later than 1720. Sex mortality ratios during the two World Wars are suppressed. These plots (along with
those in fig. 44.13a) zoom in on the mortality experience of infants and young children in high-income countries and
show how at these ages mortality profiles of these countries always exhibit a male disadvantage in mortality, unlike at
older ages, where excess female mortality persisted for a long time before giving way to excess male mortality.
13. Note that figures 44.3a–b and 44.4a–b suppress data points for years corresponding to
the two World Wars, as well as the 1918 influenza pandemic. The sex ratio of mortality spikes
for the former (the wars took a disproportionate toll on males), and exhibits a large dip for the
latter (because the pandemic disproportionately took at a toll on females).
14. The 2012 World Development Report uses the WHO data and cites the examples of
Bangladesh, China, and Vietnam, which have managed to reduce overall infant mortality
through clean water and better sanitation, and have also reduced excess female mortality in
infancy and early childhood. But in much of western Africa, there has been less focus on clean
water and sanitation: between 1990 and 2005, the fraction of urban households with piped
water actually declined from 50 percent to 39 percent in thirty-two African countries. Accord-
ing to the WHO data, countries like Burkina Faso and Nigeria have seen a much slower decline
in early-childhood excess female mortality.
15. Similar explanations underlie the differences observed for the year 2000, and thus they
are not described here.
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RABIA ALI is Economist with the World Bank’s Education Global Practice, East Asia and
Pacific Region.
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He is the author of On Suicide Bombing (2009), Formations of the Secular: Christianity, Islam,
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82 3
J O Ã O B I E H L is Susan Dod Brown Professor of Anthropology and Woodrow Wilson School
Faculty Associate at Princeton University. He is the author of Will to Live: AIDS Therapies
and the Politics of Survival (2007) and Vita: Life in a Zone of Social Abandonment (2005), and
a coeditor of When People Come First: Critical Studies in Global Health (2013).
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a Visiting Fellow at the Center for Policy Research, New Delhi. He formed part of the core
team for the World Development Report on Gender Equality and Development (2012).
824 • CONTRIBUTORS
C L A R A H A N is Associate Professor of Anthropology at Johns Hopkins University. She is the
author of Life in Debt: Times of Care and Violence in Neoliberal Chile (2012).
CONTRIBUTORS • 82 5
Psychosis: How Schizophrenia Became a Black Disease (2011) and a coeditor of Against Health:
How Health Became the New Morality (2010).
ADRIANA PETRYNA is Edmund J. and Louise W. Kahn Term Professor in Anthropology at the
University of Pennsylvania. She is the author most recently of When Experiments Travel:
Clinical Trials and the Global Search for Human Subjects (2009) and Life Exposed: Biological
Citizens after Chernobyl (2013), and a coeditor of When People Come First: Critical Studies in
Global Health (2013).
ANAID CITLALLI REYES KIPP completed her PhD in Anthropology in October 2014 with a
dissertation titled “Adoption Bureaucracies: Expert Knowledge, Documents, and Race in the
Making of Adoptive Families in Central Mexico” (Johns Hopkins University). Her research
interests include the anthropology of the state, race studies, kinship and adoption studies,
and legal anthropology and bureaucracy in Mexico and Latin America.
826 • CONTRIBUTORS
VA I B H AV S A R I A completed his PhD in Anthropology in December 2014 with a dissertation
titled “The Perfumed Semen: The Labour of Loving in Rural Orissa, India” (Johns Hopkins
University). He is currently a Postdoctoral Research Fellow at ISERDD.
CONTRIBUTORS • 82 7
INDEX
abandonment: children and, 105–106, 108–109, and, 165, 322; kinship and, 165, 317,
116–117, 127n1, 136, 140; disinterest and, 321–324, 327nn3–4; loss and, 165, 316,
664–668, 671–672; mental health/illness, 318–321, 323–325, 327n1, 327n3; materiality
511, 515, 520, 523; youth/death relation and, and, 317, 323, 328n8; memory and, 319–321,
758, 763 327, 327n6; mental health/illness and, 322,
abortion, 62, 71–72, 77–79, 80n3, 130, 132–135, 324; mother and daughter relationship and,
137–140, 530–531, 643, 645n32 165, 318, 322, 324–327; poverty and, 317,
Abraham/Ibrahim’s ritual sacrifice, 418, 422, 321–322, 327n2; self and, 313, 326; shame
632 and, 319; silence and, 324; survival and,
accredited social health activist (ASHA), 48–49, 317–318, 325, 327n1; temporality/ies and,
52–59, 61, 63 317–319, 321; touch/haptic and, 325–326;
addiction: overview of, 165, 316–319; addiction vulnerabilities and, 318, 322, 325
treatment services and, 322–323, 327n7; adoptees: overview of, 43, 114–118, 127n1;
agency and, 322, 327n7; care/caregiving abandonment and, 116–117, 127n1; adoptive
and, 165, 317–319, 322–323, 325–326; parents of, 115, 119, 121–122; affective
continuity and, 325; death and, 317, 319–320, self-determination and, 118–119, 122–123;
327n1; desires and, 318, 324–325; ethics and, alternative expressions of loss and, 125–127;
318, 323, 325, 328n8; everyday life and, 316, antiautobiographies and, 117–120;
318, 323, 327n5; futurity and, 318–321, anti-transnational adoption activism and,
324–325; gender and, 322–323, 327n7; gift 114–115, 117–119, 123–124; ASK and, 123;
and, 319–321; healers/healing and, 165, 319, better off dead and, 117; biopolitics and,
322–323; incarceration and, 320–327; 123–125; biopower and, 125; bureaucracy
institutions and, 165, 317, 322; intimacies and, 127; choice/nonchoice and, 118, 120,
82 9
adoptees (continued) 107–108, 111; kinship and, 102–111, 112n4;
124; collective identification and, 118, 125, knowledge and government and, 102, 107,
127; commodification and, 125; continuity 109–110; law/s and, 101–104, 106–108, 111;
and, 117; development and, 115, 118–120, legitimacy and bureaucracy and, 101,
124; ethics and, 115–116, 121–124; family 110–111; life and death as conjoined and
and, 115, 119, 121–123; Gathering confer- adoption files and, 101; malnutrition and,
ences and, 114, 117–119, 123; gender and, 105; media and, 100–101, 108, 110;
115–116, 120; guilt and, 116, 119; happiness movement of documents through system
and, 119, 121; historical narrative for, 118, and, 102, 104–106, 110, 112n4; nationalism
127n1; humanitarianism and, 116, 117–120, and, 102–104; obligations and, 104;
122–125; humanity and, 116–122; (im) parental rights and, 106, 109; plenary
possible lives of, 117, 120–121, 123–125; adoption or adopción plena and, 103;
justice/injustices and, 115–116, 124–125; population control/management and, 110;
kinship and, 115, 117–119, 121–122, 127; poverty and, 100–101, 104–110; queer
language and desire and, 126; legislative adoptees and, 122; rights of children and,
reforms and, 124; life and death as 102–104, 112n3; sexual/reproductive
conjoined and, 117; loss and, 115–116, 118, violence and, 132, 134–137, 139, 140n6;
121, 123–127; memory and, 120–121, 127; status of children and, 106; structural
motherhood/birth mothers and, 115–116, violence and, 107; Technical Adoption
120; myths and, 118, 124; (neo)liberalism Council meeting and, 108–110; tradition
and, 116, 122–123, 125; poverty and, 115, 118, and documents and, 101; visible/invisible
124, 127n1; race and, 115, 119–120; and, 107. See also adoptees
reproductive rights and, 114; risk and, Adorno, Theodor, 449–450
115–116, 120; sacrifice and, 124; self and, advance directives, and medicalization of dying,
115–119, 121–123, 127; shame and, 114, 116, 679–681
127n1; social issues and, 117, 120, 125; aesthetics, 95–96, 349, 374–375, 382, 386–387,
subjectivity and, 119, 125–127; suffering 544–545, 548, 754, 761
and, 116, 125, 127; symbolism and, 119, affects: Katrina-related deaths and, 567–568;
126; trauma and, 115–116, 120 organ transplant programs and, 334, 426;
Adoption Law (Inter-Country Adoption Law) of self-determination, 118–119, 122–123,
1972, 136, 138, 140n6 600–601, 612–614, 618nn28–29; valuation
adoptions: overview of, 43, 100–103, 110–111; of lives and, 627, 770, 777, 781; youth/
abandonment and, 105–106, 108–109; death relation and, 757
alleged parents or presuntos padres and, Afghanistan war, 333, 401, 405–406, 413n8,
106, 108–110; biopolitical objectives and, 775–776, 784
104; biopolitics and, 104; bureaucracy and, African Americans. See blacks
101–102, 104–111, 112n4; children’s shelter Agamben, Giorgio, 137, 139, 713, 758–759, 774
or albergue and, 102, 104–108; DIF and, Agatha, Saint, 383–386, 386, 395, 396, 397nn5–7
100–102, 100–104, 110, 111n1, 111n2; agency: addiction and, 322, 327n7; al-Qireyne
documents/documentation and bureauc- and, 144, 154; ASHA workers and, 63;
racy and, 101–102, 104–106, 108–110, dying and, 706; immunology and viruses
112n4; expert/non-expert knowledge and, and, 357–359; Katrina-related deaths and,
102; exposed status of children or expósitos 559–560, 567, 570n2; loss and, 477; MFPR
and, 106–107; family and, 102–104, and, 78; normative death and, 655; pain
107–110; gender and, 111; government and, and, 187; psychosocial treatment programs
101–104, 107, 109–110; heterogeneity and, and, 305, 312; of secular authority, 333, 371,
101; Hinduism and, 73; Islam and, 73, 136; 379n4; social issues and, 322, 327n7; stem
justice/injustices and children and, cell biotechnologies and patients’, 14;
830 • INDEX
suicides and, 719; viruses as living thing futures and, 44, 155–156; sanity/”mad” and,
and, 357–359 153; self and, 145, 149, 153–154; soft
agriculture, 217, 225–226, 229n14, 447, 580, violence against refugee community and,
582–585, 588–591, 595n6 151–152; spirit possession or dis/possession
Ahmed, Sara, 122 and, 44, 143, 153; stillbirth and, 154; the
“AIDS villages” populations, and HIV/AIDS, subject and the world and, 153; suffering
218–221 and, 144; symbolism and, 149, 153–156,
albumin (human serum albumin), as plasma- 157n4; “talisman or hijab and, 147–152;
derived blood product, 223–225, 229n10, therapy/therapeutics and, 143; tradition/s
229n13 and, 145; trauma and, 143–144, 155; the
alchemy, and healing, 642, 645n27 unconscious and, 156; vulnerabilities
Alevism, 372, 379n2, 379n8 and, 145
Alexander, Michelle, 554n3 Althusser, Louis, 449
alleged parents (presuntos padres), 106, 108–110 ambulance service, and reproductive health,
Allen, Lori, 476, 479, 489 50–51, 53–54, 59
al-Qireyne (“enigmatic life form”), and refugee American Society for Aesthetic Plastic Surgery
community: agency and, 144, 154; cemetery (ASAPS), 383
and healer and, 151–152; cleansing and Americas Development Foundation (ADF),
corpses and, 152, 154; compassion and, 143, 304
156; contiguities and, 151–152, 154–155; ancestors, 63, 303, 437, 594, 635–636,
continuity and, 153; death and, 143, 639–640, 643, 644n3, 645n22
149–150, 152; desires and, 143, 153; dreams Anderson, Siwan, 786, 807
and, 143–144, 148, 153–155; everyday life Ang, Choulean, 735, 740n10
and, 144–145, 148–149; evidence and, 143, anger, 482–484, 625, 699–700, 703, 707
145; family residence or dar and, 145–148; Anidjar, Gil, 351
fear and, 147–148; female infertility and, animation/de-animation/reanimation, 623,
144–145; gender and, 145, 153; healer or 630–631, 643, 644n8, 645n29
sheykh and, 146–147, 150–152, 154; healers/ Anıt-kabir tomb, of Atatürk, 367–368, 370
healing and textuality and, 148; humani- anthropology of medicine (medical anthropol-
tarianism and, 44; humanity and, 148, 154; ogy), 2, 5, 20–21, 31n1, 161, 730
identity and, 144–145; intersubjectivity/ies antibodies, and immunology, 358–363
and, 156; kinship and, 44, 143–145, 147, antiretroviral (ARV) drugs programs, 185–186,
150–151, 153–155; life and death as 201n3, 218, 256
conjoined and, 143, 152; men’s experiences anti-transnational adoption activism, 114–115,
and, 145; military conflicts/operations and, 117–119, 123–124
150–151, 155–156, 156n3; miscarriages and, anxiety, when heart beats fast due to (ji
144–146, 148, 151–152, 154–156; modernist ghabrana), 95, 97
form of Islam and, 149; mothers’ anxieties Applebaum, Paul, 206
caring for children and, 44, 147, 156; Arendt, Hannah, 451, 652, 774
mourning and, 154; nationalism and, 143; Aretxaga, Begoña, 168, 181n3
nonhuman forms of life and, 148; Aristide, Jean-Bertrand, 165, 301, 303, 311
obligations and, 149; pain and language Aristotle, 179, 182n15, 273, 554, 652
relation and, 146–147, 156; performativity Arnakak, Jaypeetee, 723–724, 725n8
and, 147; political violence and, 143; poverty Arnold, David, 7–8
and, 152; pregnant women and, 145–147, Arrow, Kenneth, 279, 285n17
151–152, 154–155; psychic and, 144; Asad, Talal, 32n5, 187, 479
psychotherapeutic pedagogies and, 143; asceticism, 91, 94, 97, 576, 587
Quran and, 145, 148–149; reproductive Ashley Treatment, and disabilities, 529
INDEX • 83 1
aspirations: overview of, 41, 448; colonialism belief/secular belief, and secular body, 340–342
and, 435; combat-injured soldiers’ reha- belonging, 161–162, 168, 176–177, 444, 475,
bilitation and, 403, 405, 411–412; hijras 664, 667–668, 669
and, 42, 83; hunger and, 589, 591; justice/ Benjamin, Jessica, 516
injustices and, 161, 165–166; mental health/ Benjamin, Walter, 721, 725n6
illness, 511, 517–518; racial health disparities Bennett, Gaymon, 32n5
and, 547, 551; for recovery, 161; valuation of bereavement, 696–700, 707, 709n6
lives and, 627, 775 Bergson, Henri, 449, 660n4
assisted conception, 42, 47, 67–69, 71–79, Berman, Nina, 414n14
529–530 Bernard, Claude, 17
assisted suicide, 525–526, 709n4 better off dead, 117, 399–400, 405–406, 413n3,
associative recognition theory, 355–356 414n12
Atatürk, Mustafa Kemal, 332, 367–372, 375–376, “between” (bardo), 651–652, 660n2
379n8 Bharadwaj, Aditya, 14, 23
aural/acoustic evidence, and colonialism, 435, 437 Biehl, João Guilherme, 713, 758, 772
Austin, J. L., 26–27 binary oppositions, and life and death, 630,
autism spectrum disorders (ASDs), 9–12, 164, 634, 641, 644n7, 659
446, 535 Binswanger, Ludwig, 716, 724
autobiographies/antiautobiographies, 117–120, bioethics, 47, 68–71, 529
505 biological: biolegitimacy and, 7–8; biological
autonomy/self-autonomy, 276, 434, 445, 453, sciences/informatics and, 2, 5, 6–7;
529, 534, 700, 706 healers/healing and, 332–333, 369–370;
auxiliary nurse midwives (ANMs), 49, 52, 54, idiosyncrasy and, 164, 273–274, 283–284,
56, 60, 62–64 675, 677; natural and social mutual
Azuma Hiroki, 670 absorption and, 9; oncology and medicali-
zation of dying and, 678; organ transplant
Bababaswe, Zacharie, 760 programs and, 334, 426; regeneration
Bachelard, Gaston, 432–435 within rituals of death and sacrifice and, 2;
bad death, 447, 568–569, 656. See also death; subdisciplinary boundaries and, 2, 31n1;
good death valuation of lives and, 772
Badiou, Alain, 349, 449–452 biomedical: overview of, 161; care/caregiving
Bakhtin, Mikhail, 198, 626–627 and, 284n6; life course and, 68; local biolo-
Ball, Patrick, 618n28 gies contextualization and, 15, 186;
banana tree model, 635–636, 644n17 reproductive health and, 53, 60; suicide-
Bandyopadhyay, Jayanta, 591 prevention campaigns in Canada and, 625,
Barbosa, Joaquim, 257 628, 713–714; universality of the body/ies
Bataille, Georges, 346 and, 15
Bateson, Gregory, 356 Bion, Wilfrid, 450, 456
Baucus, Max, 686 biopolitics: adoptions and, 104, 123–125;
“beautiful and good” (kalokagathia), 382, 384, 395 biopolitical objectives and, 104; biosecurity
beauty’s “dark side,” and cosmetic surgery after relation to, 8, 32n5; biosociality and, 8–9;
breast cancer, 333, 383–385 colonialism and, 335, 433, 436, 438;
being-in-the-world, 444–445, 465, 470–473, definition of, 4; disabilities and, 526;
497–498, 506, 604, 617n19. See also healers/healing and, 370; humanitarianism
world/worldliness and, 7; individual as subject and, 27;
being/to be versus death, 630, 644nn3–4, 698, justice/injustices and, 254; Katrina-related
701, 708 deaths and, 567; life and, 4, 8, 14–15;
832 • INDEX
“newness” and, 3, 5–6, 8; normativity and, sacrifice and, 70–72, 79; stem cell
4; organ transplant programs and, 425, biotechnologies and, 14, 42, 47, 68–73, 79;
427–428, 429n7; psychic and, 124, 331, stillbirth and, 79; structural violence and,
340, 714; racial health disparities and, 14; suffering and, 74, 77; supplementarity
545–547, 554; right-to-health litigation and, and, 70–71; symbolism and, 71; “take-
253–254, 264–265; secular body/ies and, home” babies and, 73, 77; therapeutic
331, 340; self-fashioning and, 254; sexual/ security and, 14, 68–71, 79
reproductive violence and, 131, 134, bioterrorism, 32n5
138–139; situation and event relation and, Birge, John Kingsley, 375
5, 27–28; suicides and, 626, 713–714, 724; birth mothers and motherhood. See mother-
valuation of lives and, 44, 772; vulnerabili- hood and birth mothers
ties of state and, 8 blacks (African Americans): abolitionism and,
biopower, 2–4, 6–8, 6–9, 14–15, 125, 254, 625, 713 775; black pathology/behaviorist and, 446,
biosecurity, 3, 5–8, 32n5 546–549, 552, 554, 555nn6–7; Black Power
biosociality, 3, 8–9, 12, 32n6, 443 and, 162, 209–212; civil rights movement
biotechnologies, and reproduction: overview of, and, 162, 207, 209–213, 544, 552, 554n1;
41, 47, 67–68, 79–80; ARTs and, 529–530; HIV/AIDS and, 779; illegal/legal drug
assisted conception and, 42, 47, 67–69, overuse and, 552; incarceration and,
71–79; bioethics and, 68–71; conception 547–548, 551–554; Katrina-related deaths
success statistics and, 73, 77; creation/ and, 559, 567, 569, 570nn1–2; life
destruction of embryos and, 68–73, 77–78; expectancy and, 779–780; mortality rates
death and, 67–68; disabilities and, and, 779–780; schizophrenia and,
529–530, 537n2; Euro-America and, 69–70, 209–212; schizophrenia and black activist
73, 80n2; female infertility and, 71–73; fetal and, 162, 207, 209–213; symptoms versus
demise/pregnancy loss and, 76–78, 80n1; black pathology and, 446, 547–548, 554;
fetal tissue use in, 72; genetics and, 75–76; urban and, 207, 212, 779–780; waiting
global and, 14, 69–71, 79–80; guilt and, rooms and, 694–695. See also whites
71–72; HOMP and, 77–78; “hope Blair, Tony, 776
technologies” and, 42, 73–74, 76; humanity blame, 514, 517–518, 601–602, 615n9
and, 68–74; ICSI and, 73–77, 80n2; blessing/curse of fertility for married couples,
individuals’ conflicts and, 71–72, 78–79; 84, 88–89, 91, 96–97
individuals’ conflicts and embryo Bleuler, Paul Eugen, 207–208
“donation” and, 71–72; Islam/Muslim and, Bloch, Ernst, 460
68, 73–77, 80n2; IVF and, 41, 68–74, Bloch, Maurice, 633, 730–733
76–79, 80n2; kinship and, 79; legislation blood donations, 163, 217, 220–225, 228n1,
and, 68–70; life and death as conjoined 229n8, 229n10, 229n13, 631
and, 47, 67–71, 79; little deaths and, 68, Blume, Stuart S., 10
70–74, 77, 79; local biologies contextualiza- Boddy, Janice, 153
tion and, 79–80; loss and little deaths and, body/ies: biomedicine and universality of, 15;
68, 70–73; male infertility and, 73–77, bodying/bodied forth and, 299, 299n4,
80n2; MFPR and, 77–79; miscarriages 703; combat-injured soldiers’ rehabilitation
and, 61, 64, 77; “newness” and, 41; and, 333–334, 399–401, 403–406,
pregnancy dangers and, 77; rebirth/reborn 413nn9–10, 413n10, 414n12; death and,
and, 71; regeneration/perpetuation and 631, 644n9; dying and, 625, 698,
little deaths and, 68; resisting death and, 700–703, 705–707, 709n5, 709nn10–12;
67; “right to die” and, 67; “right-to-life” fragility of, 3–4, 28–30, 165–166, 443, 527;
movements and, 69, 446; risk and, 61; healers/healing and, 332–333, 368–370,
INDEX • 83 3
body/ies (continued) cadaverous (cadavéré), and youth/death relation,
369–370, 378; healthy body/ies and, 331, 749, 757–758, 765n16
339, 351; life and, 332, 354, 357, 631, 644n9; cadavers (corpses), 152, 154, 334, 420, 422,
maternal body/ies and, 64; medicalization 424–427, 429n7, 667, 743, 746–748,
of dying and, 625, 678–679, 688–691; 755–756, 758, 760–763, 765n13
mind, body, soul or Geist, Körper, Seele and, calibration of relationship, and hijras, 86
640–641, 645n25; normative death and, Callahan, Daniel, 676
624, 653, 657–658; pain and, 187; scale of, cancer: overview of, 162, 182n16, 185–187, 200;
17, 20, 30; social issues and, 7, 87, 125; autopalliation and, 196, 198–199;
voices as tied to, 299n4; youth/death cancer-care evaluation services in clinics
relation and, 754, 757, 762–763. See also and, 161, 169–176; cancer statistics and,
embodiment 185–186, 201n2; care/caregiving and, 162,
Borges, Jorge Luis, 780 182n16, 190, 195–196, 199–200;
Borstam, Anna Jin Hwa, 125–127 chemotherapy and, 191–192; clinic and,
Bouazizi, Mohamed, 762 162; compassion and, 188, 198, 202n13;
Bourdieu, Pierre, 511 DCIS and, 387–389, 392–395, 394, 397n14;
brain death, and organ transplant programs, diagnosis and, 191–192, 201n2, 201n5;
419, 424–428 dying space and, 162, 189, 195; embodi-
“breath” (nefes), and healers, 370–375, 377, ment and, 194–195, 198–199; ethic of
379n2 palliation and, 182n16, 186, 190; gender
Brekke, John, 206 and medical costs and, 685; healers/
bricolage, 6, 63–64 healing and, 187, 195, 199; local biologies
Brigden, Stephanie, 615n7 contextualization and, 186; pain and, 162,
Brison, Karen J., 486, 489 186, 201nn9–10, 202n11, 202n13, 202n15,
Brodwin, Paul, 312 202n17; palliation and, 186–187, 190–192,
Bromberg, Walter, 209, 211 195, 199–200, 202n13; pharmaceutical
brother-sister incest, 86–87, 90, 93, 98n5 politics and, 162, 186, 190; phenomenol-
Brunschvicg, Léon, 449 ogy and, 185, 190, 197, 199; PMH and, 185;
Buddhism: cemeteries/burials and, 667; life prostate cancer and, 675, 680, 685, 691;
and death as conjoined and, 1; merits and, silence of patients and, 162, 192–196, 200,
732, 734; self-immolation and, 448, 202n15; social issues and, 162, 187, 191,
602–604, 607–608, 613–614, 615n5; 194–200; statistics and, 270, 284, 383,
Theravadin, 626, 732, 734, 741n20 396n3; suffering and, 187, 199–200;
bureaucracy: adoptees and, 127; adoptions and, touch/haptic and, 199; visible/invisible
101–102, 104–111, 112n4; documents/ and, 190; vulnerabilities and, 189; WHO
documentation and, 101–102, 104–106, and, 190; women and, 677. See also
108–110, 112n4; dying and, 698; legiti- cosmetic surgery after breast cancer
macy/illegitimacy and, 101, 110–111; local cancer outpatient facility: overview of, 623–625,
townships and, 219, 225–226, 228n4, 675; advance directives and, 679–681;
229n14; medicalization of dying and, 680; biological and, 678; blacks and waiting
suicides and, 713, 716, 725; tradition/s rooms and, 694–695; the body/ies and,
versus legitimacy of documents and, 101; 625, 678–679, 688–691; bureaucracy and,
waiting in clinics and, 161, 168–171, 680; care/caregiving and, 676–677, 679,
177–178 681, 686–687, 697; class/es and, 694–695;
Burnet, F. Macfarlane, 354–355, 363 clinical trials and, 687; continuity and, 686;
Bush, George W., 69 death and, 681; disabilities and, 694–695;
Butler, Judith, 125, 411, 443, 507 DNR orders and, 678–679, 681; everyday
834 • INDEX
life and, 675–676, 686–687, 691–692, 12; healers/healing and, 18, 30, 176, 368;
695; experiences and, 625, 692; health care hijras and, 83, 95–96; justice/injustices
reform and, 676, 687; health insurance and, 30; lonely deaths of elders and, 664,
and, 680, 684–686; human rights and 667, 669–670; loss and, 483–485, 488;
advance directives and, 681; idiosyncrasy in medicalization of dying and, 676–677,
biology and, 675, 677; individuality and, 679, 681, 686–687; mental illness, 517;
677, 692–694; law/s and, 625, 680–681; mothers’ anxieties for children and, 44,
loss and, 694; medical costs and, 684–686; 147, 156; normative death and, 624, 652,
medicine/medical technologies and, 675, 659; police violence and, 504; psychosocial
678–679, 683, 686–687, 689, 692–693, treatment programs and, 302, 304, 308;
695; milieu and individuality and, 625; pain racial health disparities and, 446, 543–544;
and, 689–691; palliation and, 697; prostate reproductive health and, 47–48, 50–59,
cancer and, 675, 680, 685, 691; shame and, 62–63, 64n1; right-to-health litigation and,
681; social issues and, 694–695; spaces/ 261–262; the state and, 31; suicides and,
places and, 683–684, 694; temporality/ies 722, 725nn7–8; waiting in clinics and,
and, 677–678, 686–687; visible/invisible 161–162, 164, 168, 175–177, 180, 182n13
and, 694–695; vitality and, 690; waiting carnality, 42, 83, 86, 88, 93–96, 334, 400–403,
and, 677–678, 681–683; waiting rooms 410
and, 677, 681–682; women and, 677 Carsten, Janet, 117, 121, 479, 631
Canguilhem, Georges: biotechnological “life” Cartesianism, 356, 362, 465
and resistance to death, 67; clinic, 164, 446; Casement, Roger, 436
death and situation relation to event, 559, caste hierarchies, 53–54, 56–57, 62, 580–582,
570; diseases and normal pathology, 333; 584–588, 591, 593, 595n9
everyday life and normal and pathological, Catholic Church, 627, 709n5, 766n25, 773–774.
27; healing and individuality, 18; idiosyn- See also Christianity
crasy in medicine, 164; individuality, 3, Cavell, Stanley, 3, 23–29, 31, 33n13, 202n17,
16–20, 27, 32n9, 559; knowledge of life, 489, 494, 629, 634, 644n1
772; life and milieu relation, 3, 16–20, 27, Cazdyn, Eric, 664
32n9; “measure of health,” 271; normal and celebration (joy), 62–64, 95–96, 334–335,
pathological, 16–18, 27, 32n10; some ones’ 431–434, 438, 706
death, 563, 566–567; vitalism, 32n10, 566; cemeteries/burials: death and, 635–640;
vitality, 3, 16–18, 32n10 healers/healing and, 151–152, 367–370, 375,
capitalism, and family corporate system, 376; lonely deaths of elders and, 667;
665–666, 669, 672n3 Switzerland and, 640–641, 645n24; youth/
Caravalho, Joseph, Jr., 406 death relation and, 626, 743–744, 748–754,
care: anonymous, 716–717; self-care and, 9, 12, 751, 757–758, 760, 760, 763, 765nn16–20
313 Centers for Disease Control and Prevention
care/caregiving: addiction and, 165, 317–319, (CDC), 206, 447, 535, 562, 564
322–323, 325–326; anonymous, 716–717; cerebral ataxia case, and exceptional-medicines
antenatal, 47–49, 51, 54; ASDs and, 11–12; program, 252–253, 256, 258, 261–262, 264
biomedical and, 284n6; cancer and, 162, Cezar, Denise Oliveira, 263
182n16, 190, 195–196, 199–200; combat- Chawla, Janet, 62–63
injured soldiers’ rehabilitation and, 334, chemotherapy, 170–172, 174–175, 180, 191–192,
401–402, 408, 410; conveyor belt, 161–162, 236, 239, 247n4
164, 176–177; for disabled persons, 413n2, childbirth: birth songs and, 63; hijras’
529, 531, 533–536; dying and, 624–625, pregnancy and childbirth question and,
697–708, 699–700, 703–704, 709nn10– 84, 87–89, 91, 93–95, 98n8; institutional
INDEX • 83 5
childbirth (continued) clinics and, 161–162, 168, 178–180, 181n3,
deliveries and, 48–51, 54–59, 61–63, 64n1; 182nn15–18; women and, 373, 379n9. See
life and death as conjoined and, 41; also personhood
newborn babies and, 42, 83–84, 89–92, class/es, 208–210, 548, 550–551, 559, 571n4,
94–97, 149–150, 526, 528, 532; poverty 627, 694–695, 776–778, 781. See also caste
and, 47; reproductive health and, 47–64; hierarchies
risks and reproductive health and, 47, cleansing, 135, 137–139, 152, 154, 434, 745–747,
59–60, 64; stillbirth and, 79, 154 765nn12–13
children: abandoned, 105–106, 108–109, clinic, the: cancer and, 162; clinical trials, 14,
116–117, 127n1, 136, 140; disabilities and, 164, 263–264, 271–278, 281–284, 285n9,
525–526; Hindu adoptions and, 73; 285nn12–14, 687; DOTS TB program and,
homicide rate, 346; homicide rate and, 233–236, 238, 241–242, 244–246; healers/
346; human rights and, 102–104, 103, healing and, 332, 368; medical education/
112n3; “justice” for, 107–108; mortality rate knowledge and, 161–162, 164; racial health
and, 780; mortality rates and, 753, 765n20, disparities and, 543, 545–549, 551–553;
766n22; mothers’ anxieties in caring for, recovery from disease and, 164, 271;
44, 147, 156; personhood after sexual/ right-to-health litigation and, 253–254, 257.
reproductive violence and, 44, 137–140, See also cancer outpatient facility; waiting,
138–140; silence and, 736; street children and the clinic
and, 760. See also adoptees; adoptions; Clinton, Bill, 545
youth/death relation Coetzee, J. M., 671
children’s shelter, state temporary (albergue), Cohen, Lawrence, 83, 97n2, 511
102, 104–108 Cohn, Melvin, 355–356
choice/nonchoice, 118, 120, 124 coins, and death, 634, 637–639, 645n19
Christianity: biopower and, 718; death and, Coleman, Loren, 616n10
632–633, 637, 641–642, 645n25; dying collective identification: adoptees and, 118, 125,
and, 709n5; gifts and, 632–633; martyrdom 127; loss and, 475, 479–480, 484,
and, 333, 383–386, 386, 395, 396, 397nn5–7; 486–489; mourning and, 570; normative
mind, body, soul or Geist, Körper, Seele and, death and, 624, 653, 655, 658; organ
640–641, 645n25; psychosocial treatment transplant programs and, 419, 422–423,
programs and, 165, 302, 312; reincarnation 425, 428, 429n6; secular body/ies and,
and, 641; sacrifice and, 632–633, 773–774; 350; self-immolation and, 603–604, 613,
secret prayers/healing and, 642; secular 616n15; survival and, 731; “we” and, 28,
body/ies and, 337, 340–341, 343–344, 443–444, 489, 507. See also identity
349–350; souls and, 302; suicides and, 718; Collier, Stephen J., 32n5
touch/haptic and, 708; valuation of lives colonialism: overview of, 6–8, 334–335, 431–433,
and, 627, 773–774; youth/death relation 438; ancestors and, 437; aspiration/
and, 755, 759–760, 766n25 aspirational and, 435; aural/acoustic
Christie, Laird, 717, 725nn5–6 evidence and, 435, 437; autonomy/
chronic crisis, and loss, 489 self-autonomy and, 434; biolegitimacy and,
Cicero, 774 7–8; biopolitics and, 335, 433, 436, 438;
citizenship: biocitizenship and, 3, 8–9, 12, 32n6, biopower and, 6; biosecurity and, 7–8;
443, 772; biopolitical, 41; combat-injured cleansing and, 434; cruelty and, 432–433;
soldiers’ rehabilitation and, 333–334, 400, death and, 431–433, 435–436, 438; debris/
403; disabilities and, 525–526, 536; material bits and, 431–432, 434, 437–438;
embodiment of, 403; humanity and, 400; demographic and, 432, 434, 436; develop-
racial health disparities and, 446, 551–552; ment and, 432–433, 438; dream/reverie
therapeutic security and, 14; waiting in and, 334–335, 432–438; event-aftermath
836 • INDEX
and, 334–335, 432–434, 436–437; event and 411–412; better off dead and, 399–400,
situation relation and, 334–335, 432–434, 405–406, 413n3, 414n12; body/ies and,
436–437; expectations/horizons of 333–334, 399–401, 403–406, 413nn9–10,
expectation and, 431–433, 437–438; 413n10, 414n12; care/caregiving and, 334,
experiences and spaces/places and, 401–402, 408, 410; carnality and, 334,
431–434, 436–438; expulsion/eviction 400–403, 410; compensation for veterans
dream/reverie and, 334–335, 434–438; and, 399, 413n1; conjugal relations and,
festive zone and, 334–335, 432–434, 333–334, 401–403, 406–411, 414n14;
437–438; futurity and, 431–438; healers/ continuity and, 411; DCBIs and, 405–406,
healing and, 433–436, 438; health of 414n11; death and, 399, 406–407;
population and, 7; humanitarianism and, disabilities and, 405, 412, 413n4, 413nn9–
435–437; humanitarianism and hunger 10; flesh/fleshy and, 399–401, 403–408,
and, 577–578; insurgency and, 334–335, 411–412, 413n9; gender and, 334, 399–400,
432–433; joy/celebration and, 334–335, 402–403, 406; heterogeneity and, 400–401,
431–434, 438; life and death as conjoined 403, 405–412, 413n7, 413n10, 414n14;
and, 335, 432–433, 435; ludic and, 432–433; homosexuality and, 413n7; IEDs injuries
materiality and, 431–432, 434, 437–438; and, 401, 404, 406, 409, 411; individuality
medical archive and, 431–433, 435–438; and, 399–400, 403; infantalization and,
medical archive during, 431–433, 435–438; 407–408; intimacies and, 400, 403–412,
memory and, 431–434, 437–438; method- 413n7; Iraq war and, 333, 401, 405, 413n8,
ologies and, 431–434; nervousness and, 7, 414n11; kinship and, 401–403, 407–408; life
335, 433, 435–438; “newness” and, 6–7; race and, 334, 399–400, 403–408, 413n4,
and, 436, 438; refuge spaces and, 335, 414n12; masculinity and, 334, 400, 403,
433–434, 437–438; reproductive health and, 405–408, 412; materiality and, 399–400,
334–335, 432–433; respite experience and, 411–412; nationalism and, 333–334,
335, 433–434, 437; security/secure spaces 399–400, 403, 413n7; necropolitics and,
and, 435–438; sexual assault and, 435–436; 399, 412, 413n9; (neo)liberalism and, 334,
social issues and, 7–8; spaces of flight/ 399–400, 402–404, 406, 410, 412; NMAs
refuge/respite and, 335, 433–434, 437; and, 401–402, 407–408; normativity and,
spaces/places and, 335, 431–438; subjectiv- 399–400, 402–405, 407–412, 413n7,
ity/ies and, 431, 433, 435, 438; suffering 413n10, 414n14; personhood and, 399–400,
and, 431–433, 435; suicides and, 713–714, 403, 406, 411, 413n2; precarity and, 400,
716–719, 721, 724, 725nn4–5, 726n11; 407–408, 411; psychic and, 733, 740n3;
symbolism and, 432; temporality/ies and, PTSD and, 413n8, 733; queer/queerness
334–335, 431–433, 436–438; therapy/ and, 401, 411–412, 413n4; race and, 413n6;
therapeutics during, 335, 431–438; reproductive futures and, 399–401, 403,
tradition/s and, 436–438; trauma and, 432, 405, 407, 409–411, 413n10, 414n14; risk
435–436; vernacular zone and, 334–335, and, 406, 408, 410; self-reliance/self-suffi-
433, 437–438; violence and, 334–335, ciency and, 399–400, 403, 406–407,
432–435, 438; visible/invisible and, 435, 410–411; sexuality and, 334, 399–401,
437; vulnerabilities and, 6–7; youth/death 407–411, 413n10; social issues and, 334,
relation and, 748–749, 751, 766n23 406–407, 414n13; solitude and, 411; suicides
Comaroff, Jean, 255, 262 and, 406; symbolism and, 400, 406, 412;
Comaroff, John, 255, 262 TBI and, 401, 405, 413n8; touch/haptic and,
combat-injured soldiers’ rehabilitation: overview 400, 406, 408–412; Vietnam War and, 399,
of, 333–334, 399–400, 412, 413n5; Afghani- 404–405, 413n10, 733, 740n3; vitality and,
stan war and, 333, 401, 405–406, 413n8, 406; vulnerabilities and, 408, 411; world
784; aspirations/aspirational and, 403, 405, wars and, 333, 400–401, 413n6
INDEX • 83 7
commodification: adoptees and, 125; albumin as individual/world relation and, 472;
plasma-derived blood product efficacy and, Katrina-related deaths and, 570; lonely
224, 229n13; China and leprosy treatments deaths of elders and, 665; mental health/
and, 229n12; citizenship and, 252–253, illness and, 501, 519; normative death and,
256, 258, 261–262; disabilities and 658–659; reproductive health and
newborn babies and, 528, 530–531; 9/11 discontinuities and, 52–53; survival and,
deaths and, 772, 776–777; organ sales and, 730–731, 736; waiting in clinics and,
419; plasma-fraction industry and, 163, 177–178
224–225, 229n13; racial health disparities contraception, 61–62
and, 543; of time and waiting in clinic, 173, conversations, as everyday actions, 497–500,
181n9; valuation of lives and, 771–773, 506
776–777; youth/death relation and, 750, conversion experiences, 165, 309, 312
755, 765n20, 766n24 Cooper, Astley, 383
communication, 11, 53–54, 497–500, 506, 602, copulation, 84–85, 87–88, 93–97, 97n3, 747,
616n10, 703–704, 707, 709n14. See also 755, 756, 762–763, 765n13
language corpses (cadavers), 152, 154, 334, 420, 422,
communities: adoptees’ loss and, 125; 424–427, 429n7, 667, 743, 746–748,
disabilities and, 446, 529, 531–533, 537; 755–756, 758, 760–763, 765n13
dying and, 703–707, 705; healers/healing cosmetic surgery after breast cancer: overview
and, 726n13; right-to-health litigation and, of, 333, 382–384, 395–396; aesthetics and,
257, 264–265; suicides and, 713, 718, 723; 382, 386–387; “beautiful and good” or
survival and, 736 kalokagathia and, 382, 384, 395; beauty’s
community health centers (CHCs), 52, 56, 59, “dark side” and, 333, 383–385; Christian
61–64 martyrdom and, 333, 383–386, 386, 395,
compassion, 143, 156, 181n12, 188, 198, 202n13, 396, 397nn5–7; DCIS and, 387–389,
348, 350 392–395, 394, 397n14; death and, 333,
conditional cash-transfer program, and 383–385, 387, 393, 395; documentaries on,
reproductive health, 49–50, 55–59 384; documentary and, 333, 382–384,
confessional therapeutics, and psychosocial 386–396, 396n1; ego and, 385; femininity
treatment programs, 302, 304–305 and, 382–385, 387–389, 392–395, 396n4;
conjugal relations, 333–334, 401–403, 406–411, gender and, 333, 383, 385, 393–394, 396n4;
414n14, 475–477, 480–490, 490n1, the “good” and the “bad” breast and, 333,
495–496, 498–499, 510, 514–517, 520–521 383, 385–391; grammar and, 333; happiness
connections, and mental illness, 514, 518–519, and, 382, 392–393; heterogeneity and,
522 392–393; identity and, 383–384, 392, 394;
Conrad, Joseph, 436 lesbianism and, 392–395, 394; loss and,
consciousness, and normative death, 648, 652, 383, 385, 389; makeover and, 382–383,
654–655, 657. See also unconscious, the 388–389; masculinity and, 385–387, 386,
consent, and organ transplant programs, 392–395, 394; normal pathology and, 333,
419–420 389; pink-ribbon and, 384; racism as
container-contained model, and life/concept internalized and, 333, 382; rebirth/reborn
tension, 456–457 and, 333, 383–384; self-improvement and,
contiguities, 91–93, 95, 151–152, 154–155 333, 382, 387–388, 388; semiotics/semiotic
continuity: addiction and, 325; adoptees and, square of breast cancer and, 383, 386–387,
117; al-Qireyne in refugee community and, 395–396, 396; skin-deep beauty and, 382,
153; cancer outpatient facility and, 686; 384, 395; statistics and, 383, 396n3;
combat-injured soldiers’ rehabilitation suffering and, 333, 383; symbolism and,
and, 411; healers/healing and, 342, 376; 383, 385–386, 389, 395–396, 396; touch/
838 • INDEX
haptic and, 390; the unconscious and, 385; deaf community and activism, 9–11, 164, 446
vulnerabilities and, 388 death: overview of, 623–628, 635, 641–642,
Coulter, Ann, 205 644n14; abortion and, 643, 645n32;
counseling, in TB clinics, 234, 236 addiction and, 317, 319–320, 327n1;
court cases, and sexual assault victims, al-Qireyne in refugee community and, 143,
289–291, 295 149–150, 152; ancestors and, 635–636,
Crapanzano, Vincent, 489 639–640, 643, 644n3, 645n22; animation/
creation/destruction of embryos, and assisted de-animation/reanimation and, 623,
conception, 68–73, 77–78 630–631, 643, 644n8, 645n29; anticolonial
cremation, and normative death, 650, 654, revolt of 1947 and, 732; bad, 447, 568–569,
657–658 656; banana tree model and, 635–636,
Crenshaw, Kimberle, 544 644n17; being/to be versus, 630,
cruelty, 30, 346–349, 351, 432–433 644nn3–4; binary oppositions and, 630,
cure: DOTS TB program and, 163, 237–238, 634, 641, 644n7, 659; biotechnologies and,
244; healers/healing and, 332, 370, 378; 67–68; body/ies and, 631, 644n9; brain
HIV/AIDS and, 218; hospital institutions death and, 419, 424–428; cemeteries/
and, 710n17; humanity and, 162; institu- burials and, 635–640; Christianity and,
tions and, 161, 710n17; law/s and, 161, 164; 632–633, 637, 641–642, 645n25; coins and,
MDR-TB and, 244; medicine/medical 634, 637–639, 645n19; colonialism and,
technologies and, 161; pharmaceuticals 431–433, 435–436, 438; combat-injured
and, 161; recovery from disease and, 164, soldiers’ rehabilitation and, 399, 406–407;
270, 274, 280, 283–284; risks and, 14; cosmetic surgery after breast cancer and,
scientific knowledge and, 3, 5. See also 333, 383–385, 387, 393, 395; death/rebirth
healers/healing; recovery cycle and, 651–652, 658–659, 660n2, 732;
Dinkas of southern Sudan and, 632, 634;
Da Col, Giovanni, 616n16 dying and, 625, 698, 701–702, 706–708,
Dalai Lama, 599–603, 607–608, 615n9 709n9; embodiment and, 17–18; ethics of
dance, and mental illness, 518–520, 522–523 survival in nursing home and, 698,
Dandouau, André, 644n17 706–707; experience of, 629–630,
Das, Veena: Bhopal disaster in 1984 victims 644nn5–6; functionalism and, 630; ghosts
compensation, 772; bodying/bodied forth, and, 643, 644n2; gifts and, 632–633; good,
299n4, 703; deaths and valuation of lives, 67, 447, 568–569, 623, 625, 649–651, 701,
560; ethical subjects, 477, 731; eye and 707; good/bad, 447, 568–569; half-life/
observation/weeping, 707; healing and half-death cycling and, 635–640, 635–641,
death, 733; inside and outside as “stitched 643, 645n24; healers/healing and, 332,
together,” 484; loss and everyday life, 347–349, 368–378, 733; health insurance
489–490; mourning, 501; naturalness and and, 270, 284; Hinduism/Hindus and,
everyday life, 3; numbers/enumeration and 633; historical narratives and, 732; HIV/
self-immolation, 618n28; ordinariness of AIDS and, 162–163, 217–218, 221–222,
everyday lives, 610; “ordinary ethics,” 601, 227, 229n9; humanity and, 17–18;
604, 610; pain and language, 612; space individuality and, 17–18, 641; individual/
between law/s and violence, 102; suffering, world relation and, 472; institutions and,
476–477, 480, 494; violence victims, 772; 162–163, 623; Islam and, 632–633, 635,
voiced/unvoiced effects, 30, 202n17, 637, 642; knowing/knowledge and, 629,
476–477, 480; witnesses of violence, 501; 634, 643; life/zone between two deaths,
women’s words and violence, 30, 202n17 501–502, 504, 507; little deaths and, 68,
Daston, Lorraine, 780 70–74, 77, 79; loss and, 445; making live/
Davis, Geoffrey, 135 letting die and, 627, 714; materiality and,
INDEX • 83 9
death (continued) death and rebirth cycle (saṁsāra), 651–652,
631–634, 637–638, 640–641, 643, 645n27; 658–659, 660n2, 732
mediation forms and, 624, 629–630, 643, debris (material bits), and colonialism, 431–432,
644n2, 648–651; mental health/illness 434, 437–438
and, 523; mind, body, soul or Geist, Körper, de Certeau, Michel, 303, 377, 450, 731
Seele and, 640–641, 645n25; modernity De Costa, Ayesha, 48, 50
and, 68, 79, 628, 635; moon model and, “defamiliarization” (ostranenie), and youth/death
635–636, 643, 644n17, 645n19; mortuary relation, 743–744, 763
and, 629–630, 644n2, 645n22; mourning/ Degnen, Cathrine, 726n13
mortuary and, 635–640; myths and, 623, Deleuze, Gilles, 30, 347, 352n4, 449, 452, 512,
629, 634–636, 635–636; nutrition and, 517–518, 594, 653
635; organ transplant programs and, 421, Delvert, Jean, 729
424–428, 643, 645n32; performativity and, dementia, age-related, 535–537
623, 631, 634; personhood and, 641; democracy (politics of democracy), 301–304,
pleasure-in-inflicting-pain-and-, 347–349; 306, 311, 350–351, 352n7
police violence and, 494, 496–497, Deng Xiaoping, 221–222, 225
500–501, 500–502, 500–504, 507; poverty Denny, Frederick, 379n3
and, 635; psychosocial treatment programs Derrida, Jacques, 101, 349, 701, 706–708,
and, 302–304, 308–309; rebirth/reborn 709n8
and, 633, 636; recovery from disease and, Descartes, René, 356, 362, 364n3
165; reincarnation and, 640–642; religions desires, 5, 28, 41, 83–85, 87, 91–97, 126, 140,
and, 630, 632–633, 635, 637, 642; 143, 153, 318, 324–325, 724
reproductive health and, 64; right-to-health Despret, Vincaine, 180
litigation and, 251, 285n15; rituals and, 623, de Swaan, Abraam, 697
630, 632–635; sacrifice and, 623, 631–634, detainees (al-asra’), and loss, 444, 475–476,
633, 636, 639, 645n22; self-immolation 478–480, 483–490
and, 448, 599–600, 602–604, 607, 610, development (economic development), 115,
613–614, 616n12, 616n15; shame and, 681; 118–120, 124, 221, 227–228, 432–433, 438
situation relation to event and, 559, 570; Devereux, Stephen, 578
souls and, 631, 640–641, 645n25; spirit de Waal, Alex, 578
and, 634, 635–641, 636–638, 641–642; diagnosis, 191–192, 201n2, 201n5, 218–219,
“standing persons” coins or tsangan’olo and, 236, 244, 246
637–639, 645n20, 645n23; sublunary and, Diderot, Denis, 680
636, 643; suicides and, 712–715, 719–721, disabilities: overview of, 446, 536–537; abortion
724, 725; survival and, 500, 626, 731–734, and, 530–531; ADA and, 413n9, 554n1;
740n2, 740n6; Switzerland and, 640–643, ARTs and, 529–530; ASDs and, 9–12, 164,
645n24; symbolism and, 638, 640, 671, 446, 535; Ashley Treatment and, 529;
709n12; temporality/ies and medicine/ assisted suicide and, 525–526; autonomy/
medical technologies and, 656–657; thick self-autonomy and, 529, 534; bioethics and,
description and, 637; valuation of lives and, 529; biopolitics and, 526; biotechnologies
560, 634, 644n12, 770–771, 773–778; for reproduction and, 529–530, 537n2;
virtue/virtuous deaths and, 448, 602–604, cancer outpatient facility and, 694–695;
610, 613, 616n12, 616n15; visible/invisible care/caregiving and, 413n2, 529, 531,
and, 636, 638, 643; vitalism versus, 631, 533–536; children and, 525–526; citizenship
644n9; vitality and, 633–635, 644n9; and, 525–526, 536; combat-injured soldiers’
youth/death relation and, 626, 627, 750, rehabilitation and, 405, 412, 413n4,
751–754, 757, 760–761, 763, 767n26, 413nn9–10; commodification and newborn
767n27. See also dying; normative death babies and, 528, 530–531; communities
840 • INDEX
and, 446, 529, 531–533, 537; deaf commu- dismounted complex blast injuries (DCBIs),
nity and activism and, 9–11, 164, 446; 406, 414n11
dementia and, 535–537; disability rights disorder, and youth/death relation, 754–757,
movement and, 12, 446, 525–529; 766nn23–24
discrimination against, 525, 527; equality displacement experience, and police violence,
and, 534; equality/inequality and, 534; 502–506
ethics and, 413n2, 529–531; eugenics/ Diwan, Bishal, 48, 50
neoeugenics and, 526–532; euthanasia and, Doctors without Borders, 581
525–526; family and, 446, 527–529, documentation, 101–102, 104–106, 108–110,
531–534; feminism and, 529–530, 534; 112n4, 384, 662–663
futurity and, 532, 536–537; genocide in Dōgen, 1
Nazi Germany and, 527; HOMP and, Donne, John, 343–344
77; humanity and, 527–528, 531, 534, Donzelot, Jacques, 104
536; identity and, 446, 533, 536; infanticide DOTS TB program: overview of, 163, 232–234,
and, 526, 528; institutions and, 528; IVF 236, 245–246; chemotherapy and, 236,
and, 536; IVoC and, 534–535; justice/ 239, 247n4; clinic and, 233–236, 238,
injustices and, 533–534; kinship imagining/ 241–242, 244–246; cure rates and, 163,
reimagining and, 526–529, 531–534; life 237–238, 244; diagnosis and, 236, 244,
and, 413n4, 446, 526–529, 534–537; 246; disease control and, 232, 236, 245;
longevity and, 534; long-term life support DOTS-Plus and, 242–244; drugs and,
and termination and, 526, 537n1; loss and, 162–163, 232–234, 233, 236–242, 244–246,
531; materiality and, 544, 554; medical 247n4, 248nn6–7, 249n9; historical
model and, 526–529; modernity and, narrative for, 233, 236, 239; marketization
526–527, 529, 532, 536; motherhood and, and, 162–163, 232–233, 239–242, 245–246,
528–529, 536; NDY rights group and, 248nn6–7; MDR-TB and, 232–235,
525–526, 528–529; NIPT and, 530, 537n2; 241–247, 247n1, 248nn6–7, 249n9;
normativity and, 446, 527–528, 532–533; methodology and, 163, 232, 236–237, 239,
personhood and, 413n2, 528; prenatal 246, 247n2; NTP and, 236–237; pharma-
tests and, 525, 529–532, 537n2; public ceutical industries and, 163, 232–233,
space and, 525–529, 531, 533–535, 537; 237–242, 246, 248nn6–7; private
social issues and, 11, 532; statistics and, practitioners and, 232–233, 235, 237–238;
526–527, 535–536; survival and, 532, 534; stigmatization and, 235, 238; WHO and,
symbolism and, 10; Tay-Sachs disease 163, 232–233, 239–240, 244, 246
and, 531–532; visible/invisible and, Doty, Mark, 97n3
525–526, 535 dream (reverie), 143–144, 148, 153–155, 334–335,
Disability Rights Education and Defense Fund 432–438, 625–626, 712–713, 719–721, 725,
(DREDF), 529 734, 738
Disaster Mortuary Operational Response Team Dreze, Jean, 578–579
(DMORT), 562, 568 Dube, K. C., 513–514
discrimination: against disabilities, 525, 527; duCille, Michelle, 414n13
health insurance and, 270, 284; HIV/AIDS ductal carcinoma in situ (DCIS), and cosmetic
and, 222, 256; homophobia and, 327n7; surgery, 387–389, 392–395, 394, 397n14
marginalization and, 185, 190, 421–422, Dumit, Joseph, 545
429n7; racial health disparities and, Durham, Deborah, 752
543–545, 548, 551–552, 554n1; racism and, Durkheim, Émil, 423, 612
6, 213, 327n7, 333, 382; right-to-health dying: overview of, 623–625, 623–628,
litigation and, 256–257. See also racial 696–697, 708, 708nn2–3, 709n13,
health disparities 709n16, 710n17; agency and, 706; anger
INDEX • 841
dying (continued) places and, 700, 706; suffering and, 698,
about, 625, 699–700, 703, 707; autonomy/ 705, 707–708; temporality/ies and, 698,
self-autonomy and, 700, 706; bereavement 705, 706; touch/haptic and, 625, 698, 700,
and, 696, 698–699, 709n6; bereavement 704–705, 708, 709n8, 710n19; vitality and,
counselors and, 696–697, 699–700, 707; 700; waiting in clinics and, 168; world
the body/ies and, 625, 698, 700–703, wars and, 699, 709n7. See also death;
705–707, 709n5, 709nn10–12; bodying/ normative death
bodied forth and, 703; bureaucracy and,
698; cancer and, 162, 189, 196; care/ economic development, 115, 118–120, 124, 221,
caregiving and, 624–625, 697–708, 227–228, 432–433, 438
709nn10–12; communicability/dying from economic insecurity, 14, 164–165, 292,
Katrina and, 447, 560, 567–568, 572nn16– 296–298, 299n2, 465–466, 666, 669,
17; communication and, 703–704, 707, 729–730, 740n1
709n14; communities and, 703–707; death educational achievement, and racial health
and, 625, 698, 701–702, 706–708, 709n9; disparities, 543, 549–554
embodiment and, 705, 707–708; ethics of ego, 385, 654–655
survival and, 698, 706–707; euthanasia el-Badry, M. A., 786, 807
and, 697, 709n4; finitude and, 698, 700, Eldegez, Uluğ, 425
708; flesh/fleshy and, 698, 708; funerals elders, and Katrina-related deaths, 559, 563,
and, 703; futurity and, 706; good death 570n1
and, 625, 701, 707; hope/hopelessness electroconvulsive therapy (ECT), 517
and, 625, 697–699, 704–706, 709n5; Elvey, Anne, 708
hospice movement and, 697, 709n4; embodiment: cancer and, 194–195, 198–199;
humanity and, 625, 706; identity and, 703; citizenship and, 403; death and, 17–18;
illness and, 698, 703–705; infantalization dying and, 705, 707–708; healers/healing
and, 705, 707, 709n15; institutions and, and, 368–370, 373, 376–377; hunger and,
623; intimacies and, 624, 702–703, 580; hypochondria and secular body/ies
710n19; Katrina hurricane and, 447, 560, and, 339; Katrina-related deaths and,
567–568, 572nn16–17; language and, 700, 569–570; loss and, 444, 482; mental
703, 707–708; laying out the body/ies for health/illness, 519, 523; personhood and,
undertakers or afleging and, 701–702, 15, 304; psychosocial treatment programs
709nn10–12, 710n19; life and, 30, 45, 706; and, 303, 309–312; secular body/ies and,
loss and, 700, 703, 705–707, 706; moral 339; self-immolation and, 448, 604,
rebirth/reborn and, 706; normative death 610–611; social, 198–199; suicides and,
and, 648, 649–652, 654–655, 660n2; 724; women and loss and, 445; youth/
normativity and, 625, 698, 704–706; death relation and, 763. See also body/ies
nurses and, 625, 697–699, 701–702, emotion present, making an (rasa), 95–97
704–708, 709n10, 709n16; observation of, employment: hunger an, 582–584, 586, 591,
700, 707; observation of dying and, 700, 595n6; individual/world relation and, 444,
707; order and work culture and, 625, 696, 463, 466–468, 473; parolees/ex-offenders
704–708; pain and, 697, 700; pain and, 294, 299n3; racial health disparities
management and, 697; palliation and, and, 543, 546–552; risk and, 14, 164–165,
697; personhood and, 704–706; psycholo- 296–298; sexual assault victims imagining
gists and, 700, 709n16; secular body/ies recovery and future, 164–165, 290,
and religions and, 708; self and, 697, 700, 292–298, 299n2
703, 705–707; social issues and, 624–625, endurance (sumoud), and loss, 444–445, 477,
698–700, 703, 706–707; social workers 486–488
and, 625, 696, 699, 709n16; spaces/ Epstein, Steven, 13
842 • INDEX
equality/inequality: adoptions and, 103, hunger and, 447, 576–578, 587–588;
107–108; disabilities and, 534; earthquake individual/world relation and, 444,
in 2010 relief and, 313; expert knowledge 465–468, 471–473, 473n1, 473n3; laughter
and disease/death and, 162–163; HIV/ and, 87–88, 95–96; lonely deaths of elders
AIDS and, 162–163, 217, 221–222, 227, and, 663, 669; loss and, 444–445, 476,
229n9; institutions and, 162–163; 482, 487; mental health/illness, 445,
marketization and, 162–163; (neo) 510–512, 514, 518, 520, 522; organ
liberalism and, 12; racial health disparities transplant programs and, 419–420, 423,
and, 544; right-to-health litigation and, 427; police violence and, 493, 495–504,
162–164, 257, 262–263; schizophrenia and, 506–507; psychosocial treatment programs
210; secular body/ies and, 350; valuation of and, 165, 301–306, 312; racial health
lives and, 627, 770–778, 780–781; waiting disparities and, 446, 545, 548, 552–553;
in clinics and, 167–168, 178–180, 182n15. reproductive health and, 47, 64, 68–70;
See also justice/injustices self-immolation and, 447–448, 601–602,
Esler, Ebru, 420–421, 429n2 604–612, 615n9, 616n11, 617n22; sexual
ethics: addiction and, 318, 323, 325, 328n8; assault victims and, 164, 289–292, 295,
adoptees and, 115–116, 121–124; bioethics 298–299; situation and event relation and,
and, 47, 68–71, 529; brother-sister incest 30; suicides and, 713–716, 718–719,
and shame and, 86–87; disabilities and, 721–722, 725, 725n8; survival and, 626,
413n2, 529–531; ethic of palliation and, 730, 734, 736–738; valuation of lives and,
182n16, 186, 190; Islam and, 145; memory 772; vulnerabilities and, 28–29, 33n13;
and survival, 502, 706; obligations and, youth/death relation and, 753, 767n27
271–273, 275–280, 285n14; organ evidence-based knowledge, 102, 104, 111, 143,
transplant programs and, 630, 644n8; poli- 145, 257, 446, 543–546, 548, 554, 555n9,
tics/political power/secular authority and, 600, 604–606, 617n22
443, 447–448; recovery from disease and, evolutionary paradox, 361–362
270–273, 275–280, 282–283, 285n14; exceptional-medicines program, 252–253, 256,
reproductive health and, 47; self-immola- 258–264, 262
tion and, 447–448, 601, 604–614, 618n28; excess mortality rates: excess female mortality
subjectivity/ies and, 444, 477–478, 731; rates and global SRM and, 563, 571n10,
survival and, 732–733, 739; survival in nurs- 628, 779–780, 786, 793–802, 794–802,
ing home and, 698, 706–707; survival of 818n3, 818n11, 821n14; excess male
HIV/AIDS patients and, 502; valuation of mortality rates and global SRM and, 628,
lives and, 627, 770–771, 773, 777–778, 781; 789–790, 793, 801–802, 803, 804,
youth/death relation and, 743, 757, 808–811, 818n11; Katrina-related deaths
760–762, 763 and, 447, 560–566, 570n1, 571n10; missing
ethnographic museum, and healers, 375–377 girls/sex selection at birth statistics and
eugenics/neoeugenics, 526–532 female, 563, 571n10, 628, 786, 818n3
euthanasia, 525–526, 697, 709n4 existence and identity relation, 9–15, 32n6, 164
event and situation relation, 5, 27–29, 334–335, expectations (horizons of expectation), and
432–434, 436–437, 559, 570 colonialism, 431–433, 437–438
everyday life (quotidian experience): overview experiences: cancer outpatient facility and, 625,
of, 1–3, 16, 26–31; addiction and, 317–318, 692; death and, 629–630, 644nn5–6;
323, 327n5; al-Qireyne in refugee commu- dream/reverie and colonialism and,
nity and, 144–145, 148–149; cancer 334–335, 432–438; observation of dying,
outpatient facility and, 675–676, 686–687, 700, 707; pain and, 700; patients and
691–692, 695; conversations and, waiting in clinics and, 169–176, 181nn9–11;
497–500, 506; disabilities and, 446, 534; police violence and displacement and,
INDEX • 843
experiences (continued) Feminist Response in Disability (FRIDA), 529
502–506; respite and colonialism and, 335, fertility/infertility: fertilization and, 41, 76;
433–434, 437; spaces/places and, 431–434, genetics and male, 80n2; hijras and,
436–438 84–91, 95–97; IVF and, 41, 68–74, 76–79,
experimental therapies, 164, 273, 277–280, 80n2, 140; men and, 73–79, 80n2; women
285n16 and, 41, 68–74, 76–79, 80n2, 144–145
exposed (expósitos) status, 106–107 festive zone, and colonialism, 334–335, 432–434,
expulsion/eviction dream/reverie, and 437–438
colonialism, 334–335, 434–438 fetus, 72, 76–79, 80n1, 332, 359–360
extensively drug-resistant tuberculosis (XDR finer/coarser tastes in grains (grain hierar-
TB), 246 chies), 447, 587–588, 591–594, 596n10,
596n12
Fabian, Johannes, 623 finitude, 18, 29, 342, 350, 698,
Fagot-Largeault, Anne, 566 700, 708
fall out of the world, 444–446, 448, 470–471, Fischer, Andrew M., 617n23
473, 507. See also “not-at-home” Fischer, Michael, 32n3
family: adoptees and, 115, 119, 121–123; adoptions fixed dose combinations (FDCs), 239
and, 102–104, 107–108, 110; brother-sister flesh/fleshy, 299n4, 326, 382, 384, 395,
incest and, 86–87, 90, 93, 98n5; disabilities 399–401, 403–408, 411–412, 413n9,
and, 446, 527–529, 531–534; familial loss 698, 708
and, 332, 368; family corporate capitalist flirting and seduction of men, by hijras,
system and, 665–666, 669, 672n3; 83–86, 88
family-planning programs and, 48, 49, food, 447, 576–578, 581, 584, 586–594, 596n10,
52–53, 60–61, 131, 135; intergenerational 596n12
conflict and, 626, 754–761, 764, 766nn24– forced pregnancy, 130, 133–134, 138. See also
25; older women’s/relatives’ role and, 54–55, pregnancy
57, 59, 61–63; parental rights and, 106, 109; Fordyce, David, 348
refugee community residence and, 145–148; forgetting, 291–292, 311–312. See also memory
as symbolic capital, 55–56; valuation of (remembering)
children and, 41. See also kinship forgive/forgiven, 25, 422–423, 428
family residence (dar), and al-Qireyne in refugee form/s of life: combat-injured soldiers’
community, 145–148 rehabilitation and, 334, 400, 403,
Farmaian, Abou, 342 407–408, 413n4; continuity and, 43;
Farr, William, 788–789 disabilities and, 413n4; dying and, 30, 45;
fashioning/unfashioning, 121, 149, 254, everyday life and, 3, 23, 26, 45; experience
652–655 and, 19; forgive/forgiven and, 25; form
Fassin, Didier, 4, 14–15, 291, 325, 502, 706 and, 3, 24; fragility of the body/life and,
fear, and al-Qireyne in refugee community, 3–4, 28–29, 443; given/givenness and,
147–148 23–24; grammar and, 24, 26; heterogeneity
Federal Bureau of Investigation (FBI), 209, and, 10, 22; “invented natural history” and,
212–214 26, 42; language and, 3, 10–11, 21–29,
Feierman, Steven, 201n4 32n3, 334; life and, 3, 24; loss and, 476,
Fein, Deborah A., 535 480, 489–490; milieu and, 45; “newness”
Feinberg, Kenneth, 772 and, 2; nonhuman life and, 148, 178, 332;
femininity, and cosmetic surgery after breast ordinary expression versus conceptual
cancer, 382–385, 387–389, 392–395, 396n4. schema and, 3, 33n12; self and, 12, 30;
See also masculinity situation and event relation and, 5, 27–28;
feminism, 130, 132–134, 529–530, 534 social issues and, 3–4, 21, 23; sublunary,
844 • INDEX
636, 643; vitality and, 3–4; waxing and 164–165, 290, 292–298, 299n2; suicides
waning and, 3–4, 30–31, 331, 448 and, 721, 723, 726n14; survival and, 730,
Foucault, Michel: biopolitics, 4, 253–254, 545, 732; youth/death relation and, 627,
713–714; biopower, 4, 254, 713; confessional 761–762. See also hope/hopelessness;
therapeutics, 305; ethical substance, 328n8; reproductive future/s
finitude, 18; “governmentality,” 53;
government frugality and markets versus gay community (homosexuality), 327n7,
justice, 253–254, 265; grammar, 725nn1–2; 392–395, 394, 413n7
individuality and pathological, 17–18; institu- Gayon, Jean, 32n9
tions and modernity, 551; making live/ Geertz, Clifford, 102, 108
letting die, 627, 714; (neo)liberalism, gender: addiction and, 322–323, 327n7; adoptees
253–254; pastoral power, 305, 531; popula- and, 115–116; adoptions and, 111; al-Qireyne
tion management, 161; racism and in refugee community and, 145, 153;
bricolage, 6; sadism, 346; security and brother-sister incest and, 90; combat-
population, 5–6; sex and better off dead, injured soldiers’ rehabilitation and, 334,
413n3; “thick natural phenomenon” and 399–400, 402–403, 406; cosmetic surgery
population, 5; universal of desire, 5 after breast cancer and, 333, 383, 385,
Fox, Renée, 424 393–394, 396n4; hijras and, 83, 91;
fractionation (plasma-fraction) industry, and medical costs and, 685; sexual assault
HIV/AIDS, 163, 217, 220–224, 228n1, victims and, 165, 297–298; sexual contract
229n8, 229n13 and, 297–298; sexual/reproductive
fragility of the body/life, 3–4, 28–30, 165–166, violence and, 130–132; valuation of lives
443, 527 and, 627, 772, 781; violence and, 30, 116,
Frank, Arthur, 465 122, 130–132
Frazer, James G., 633 genetics, 75–76, 80n2, 261–262, 262, 273,
Freud, Sigmund, 29, 33n13, 385, 396n4, 479, 282–284, 363
482, 717 genitals, and combat-injured soldiers’
fucking, and hijras, 84–85, 87–88, 93–97, 97n3. rehabilitation, 400, 403–406, 413n10,
See also copulation 414n12
Fullwiley, Duana, 32n8 genocide/postgenocide, 526–527, 536–537, 736
functionalism, 198, 286n18, 630 Ghani, Ashraf, 676–677
funerals: Botswana and, 752; dying and, 703; ghosts (spectral), 2, 30, 479, 490n1, 643,
individual/world relation and, 472; Katrina- 644n2, 652, 659–660, 730, 732, 737
related deaths and, 569–570; normative gifts, 319–321, 424, 429n2, 429n5,
death and, 650, 652, 654, 657–658; police 632–633, 667
violence and, 494–495; psychosocial given/givenness, 4, 23–24, 41, 444,
treatment programs and, 308; public space 464–466, 470
and, 752; youth/death relation and, 744, Glaser, Barney, 697
748, 750, 754–757, 756, 760, 766n21, global discourse: bioethics and, 70–71;
766n24, 767n26 biotechnologies of reproduction and, 14,
futurity: addiction and, 318–321, 324–325; 69–71, 79–80; care/caregiving and, 753;
colonialism and, 431–438; disabilities and, clinical trials and, 14, 164, 263–264,
532, 536–537; dreams and suicides and, 271–278, 281–284, 285n9, 285nn12–14,
714–715; dying and, 706; law/s and 687; evidence-based knowledge and
adoptions and, 101, 104; loss and, 318–321, humanitarianism and, 600; experimental
324–325; police violence and, 501–502; therapies and, 164, 273, 277–280, 285n16;
recovery from disease and, 273; sexual export/import of blood products and, 223,
assault victims imagining recovery and, 229n10; grain hierarchies and, 593–594,
INDEX • 845
global discourse (continued) guardian spirit (neak ta), and survival, 737–739,
596n12; Green Revolution and, 588; health 740n16
care rankings and, 779; local versus global Guattari, Félix, 30
biologies and, 185; medical costs and, 780; guilt, 71–72, 116, 119, 303, 308–309, 311,
middle-income countries and, 60, 496–497
627–628, 785, 788, 807; North-South gun violence, 162, 205–206, 212–213
divide and, 14, 186, 776; pain/pain Gupta, Akhil, 107
management and, 185, 189–190; palliation Gupta, Sanjeev K., 50
marginalization and, 185; pharmaceutical/ Guyer, Jane I., 182n18, 229n13
biomedical markets and, 255; population Gyalsten Yolmo, Karma, 651–653
control/management and, 139; recovery Gyatso, Janet, 599
from disease and, 164, 271–276, 280, 284,
285n12; self-immolation and, 600, 616n10, Haberal, Mehmed, 424–426
762; stem cell biotechnologies and, 14, hack taxi drivers, and sexual assault victims,
69–71; TB and, 239, 244; water (shortages) 164–165, 296–298
relation to food and, 594. See also sex ratio Hage, Ghassan, 9–10
of mortality (SRM) Halbwachs, Maurice, 627, 771, 777, 781
Global Fund against AIDS, Tuberculosis and half-life/half-death cycling, and death, 635–640,
Malaria (GFATM), 239–240, 245 635–641, 643, 645n24
Goedefroit, Sophie, 635 Halpern, Joel M., 717, 725nn5–6
Goldstein, Kurt, 16–17, 19 Hammond, Elizabeth, 387–388, 388
“gone mad” (majnooneh), and loss, 484, 488 Han, Clara, 30
Good, Byron, 698 Hansen, Kathryn, 132
“good” and “bad” breast, 333, 383, 385–391 happiness, 119, 121, 382, 392–393
good death, 67, 568–569, 623, 625, 649–651, haptic (touch), 199, 325–326, 390, 400, 406,
701, 707. See also bad death; death 408–412, 625, 698, 700, 704–705, 708,
Goodfellow, Aaron, 51, 477 709n8, 710n19
Goodman, Steve, 693 Harris, Sam, 341
“good science,” and global clinical trials, 14 Hart, Keith, 638
Gorringe, Timothy, 340 Harvard University study on Katrina survivors,
Gould, Sara, 644n17 561–562, 571n8
Graburn, Nelson, 725n4 Hastrup, Kirsten, 579–580
Graeber, David, 461n8 Havel, Vaclav, 776
grain hierarchies (coarser/finer tastes in healers/healing: overview of, 331, 332–333, 337,
grains), 447, 587–588, 591–594, 596n10, 351, 378, 444–448, 642; addiction and, 165,
596n12 319, 322–323; aesthetics and, 349, 374–375;
grammar, 24, 26, 331, 333, 339–340, 351, 424, agency of politics/political power/secular
481, 490, 512, 519, 715. See also language authority and, 333, 371, 379n4; alchemy
Graunt, John, 778 and, 642, 645n27; Alevism and, 372,
Gray, Kevin, 173, 176 379n2, 379n8; belief/secular belief and,
Greece, ancient, 652, 773 340–342; biopolitics and, 331, 340, 370; the
Green, James W., 67 body/ies and healing rituals and, 333,
Greenhough, Paul, 579–580, 584 371–372; “breath” or nefes and, 370–375,
Green Revolution, 580, 588–591 377, 379n2; cancer and, 187, 195, 199; care/
Greimas, Algirdas J., 386, 395 caregiving and, 18, 30, 176, 368; cemeter-
grief, 479, 486–487, 490n1, 494, 497–498, ies/burials and, 151–152, 367–370, 370, 370,
506–507, 568–569, 652, 664, 668 375, 376; Christianity and, 337, 340–341,
Gross, Terri, 405 343–344, 349–350; Christian prayers and,
846 • INDEX
642; clinicians power/powerlessness and 367–378, 378n1, 379n4; secular and
clinical trials and, 271–273, 282–283; politics/political power and, 339–340;
clinics and, 332, 368; collective identifica- secularism and, 369, 378n1; self and, 338,
tion and, 350; colonialism and, 433–436, 340; sensibility and, 344–345, 348; sheykh
438; communities and, 726n13; compas- in refugee community and, 146–147,
sion and, 348, 350; continuity and, 342, 150–152, 154; sickness/sick body/ies and,
376; cruelty and, 346–349, 351; cures and, 331, 342–343, 345–347, 351; social issues
332, 370, 378; death and, 332, 347–349, and, 347, 352n4; souls and, 343–344; spirit
368–378, 733; democracy/politics of and, 332, 367, 372; subjectivity/ies and,
democracy and, 350–351, 352n7; disease/ 368–370, 372; suffering and, 332, 337–340,
event and, 18, 30; embodied subject and, 344–345, 347–351, 368; sympathy and, 338,
339; embodiment and, 368–370, 373, 345, 348; TCM and, 642; temporality/ies
376–377; equality and, 350; ethnographic and, 368–370, 372–378; textuality and
museum and, 375–377; familial loss and, al-Qireyne in refugee community and, 148;
332, 368; finitude and, 342, 350; grammar therapy/therapeutics and, 332, 369–370;
and, 331, 339–340, 351; health of population tomb or türbe of, 369, 375–376; torture and,
and, 369–370; healthy body/ies and, 331, 346–347, 349; tradition/s and, 342,
339, 351; homeopathy and, 642, 645n27; 367–368, 370–372, 375–377, 379n3, 379n9;
homicide of children and, 346; humanity violence and, 346, 352n2, 368, 375;
and, 341–342, 344–346, 349–350; vulnerabilities and, 350; waiting in clinics
hypochondria and, 337–339, 343–345, 347, and, 176; women and, 344–346; worldli-
349; hysteria and, 338, 344–345; immortal- ness and, 342–345. See also cure; recovery
ism and, 342; individuality and, 18, 33n11; health care: equality/inequality and, 779; global
individual violence and, 345–347; Islam and, 753; health insurance and, 270–271,
and modernity and, 332, 367–369, 375–376; 279, 284, 285n17, 547, 680, 684–686,
language/poetic speech and, 332, 370–374, 780; public, 51–55, 58–59, 61–63, 64n1,
377–378, 379nn2–7; legitimacy/illegitimacy 559, 564, 571n3, 628, 785, 805–806, 817,
and, 332, 373; life and, 338–339, 342–343, 821n14; racial health disparities and,
350–351, 376–377; loss and, 332, 368; 545–546, 554n4; rankings of, 779; reforms
materiality and, 338, 374, 376–377; medical and, 50–52, 54, 58–62, 176, 182n13,
education/knowledge and, 18, 33n11; 270–271, 547, 676, 687, 780; valuation of
medical knowledge and, 18, 33n11; mental lives and, 778–779
health/illness, 513–514; modernity and, 332, health of populations, 7, 226, 369–370, 753,
337–338, 340–345, 347–350, 368–370, 785, 804–807, 817
372–375, 378, 379n6; (neo)liberalism and, Healthy People 2010, 545–546
337, 340–342, 345, 347, 349–350, 352n7; Heidegger, Martin, 28, 465, 471–472, 652
pain and, 331, 337–339, 342–344, 348; hepatitis B, 220, 228n1
psychic and, 331, 340, 347; psychosocial hepatitis C, 220, 228n1, 259–260
treatment programs and, 165, 305, 312–313; Herzfeld, Michael, 171
Qur’anic, 332, 368; the real/unreal and, heterogeneity, 10, 22, 101, 137, 139, 392–393,
339; religions and, 331, 338–339, 341–344; 400–401, 403, 405–412, 413n7, 413n10,
religious activities space or dergâh and, 414n14
374–376; sadism and, 345–347; saintly high-order multiple pregnancy (HOMP), 77–78
authority relation with political power and, hijab (“talisman”), and al-Qireyne in refugee
368, 370, 373–374, 377–378; saint or evliya community, 147–152
and, 332, 367–368, 370–374, 377–378, hijras: overview of, 42–43, 83–84, 97n1;
379n3, 379n5, 379n9; saints in modernity aesthetics and, 95–96; asceticism and, 91,
and, 373, 379n9; secular and, 332–333, 94, 97; aspirations toward reproduction
INDEX • 847
hijras (continued) 229n9; ethics of survival and, 502, 706;
and, 42, 83; calibration of relationship and, health-care rights and, 256, 263; health of
86; care/caregiving and, 83, 95–96; population and, 226; hijras activism and,
carnality and, 42, 83, 86, 88, 93–96; 83, 98n9; hope/hopelessness and, 706;
contiguities and, 91–93, 95; death/dead household farming economy and, 217,
babies and, 89–91; desires and, 83–85, 87, 225–226, 229n14; hukou system and, 163,
91–97; etiquette and, 86–87; everyday life 222, 229n9; identity and existence relation
disruptions and, 87, 95–96; fertility/ and, 9, 12–15, 164; importation of blood
infertility and, 84–91, 95–97; flirting and products and, 223, 229n10; joy/felicity and,
seduction of men and, 83–86, 88; fucking 706; justice/injustices and, 226; local
and, 84–85, 87–88, 93–97, 97n3; gender township bureaucracies and, 226, 229n14;
and, 83, 91; HIV/AIDS activism and, 83, monetization and plasma-fraction industry
98n9; humanity and, 87–88, 94–96; incest and, 225; mortality rate and, 753; (neo)liber-
and, 87, 94–95; ji ghabrana and, 95, 97; ji alism and, 221–222, 225; pharmaceutical
halka and, 95–96; khwaja and, 88–93, 95; rights and, 256; plasma-fraction industry
laughter provocation by, 83–85, 87–88, and, 163, 217, 220–224, 228n1, 229n8,
95–97; legitimacy/illegitimacy and, 83, 229n13; political power and, 218, 222, 227;
98n9; life/death and, 83–84, 89–92, population control/management and, 163,
94–97; lovers relation with, 83, 85–86, 89, 217, 218–219, 221–222, 229n8; poverty
92–93; myths and, 87–92, 95–97; and, 221, 227–228; public-private interface
obligations and, 91; performativity and, 84, in governmental institutions and, 256;
90–91; poverty and, 83, 95; pregnancy and rebirth/reborn and, 706; reproduction of
childbirth question and, 83–84, 87–90, 91, household and, 163, 225; risk and,
93–95, 98n8; queer/queerness and, 83; 220–221, 225, 229n7; secrecy and,
rasa and, 95–97; reproductive futurity 218–220, 222, 228n2; social issues and,
anxieties and, 42, 83–84, 91–92, 94–95; 218, 262, 706; SRM and, 628, 784, 786,
risk and, 86, 94, 97; sadaa suhaagan and, 788, 806, 817n1, 818n10; statistics and,
88–89, 91–93, 96, 98n8; sadness/joy 226–227; suffering and, 227; treatment
sharing or sukh dukh and, 95–96; sexual programs for, 163–164, 256, 259; urban
differences/practices and, 83, 90–91, and, 222–223, 228, 229n9; viruses as
97nn1–2; sexual pedagogy and, 85, 88, 93, living thing and, 358; vulnerabilities and,
97; social issues and, 86, 88, 92; tradition 163, 217, 221
or dastoor and, 86; visible/invisible and, 92 Hojdestrand, Tova, 665
Hinduism/Hindus, 42, 54–55, 59, 61, 69, Holmes, James, 205
73, 633 Holocaust, 526–527, 736
HIV/AIDS: overview of, 163, 217–220, 228, Holston, James, 263
228n5; “AIDS villages” populations and, homelessness, 548, 550–551, 665, 669, 671–672
218–221; ARV drugs programs and, homeopathy, and healing, 642, 645n27
185–186, 201n3, 218, 256; Botswana and, homosexuality (gay community), 327n7,
186, 190; commodification and plasma- 392–395, 394, 413n7
fraction industry and, 163, 224–225, Honig, Elizabeth, 117
229n13; cures and, 218; death and, hope/hopelessness, 42, 73–74, 76, 625, 666,
162–163, 217–218, 221–222, 227, 229n9; 672, 697–699, 704–706, 709n5. See also
development and, 221, 227–228; diagnosis futurity
and, 218–219; discrimination and, 222, Hopper, Edward, 521–522
256; economic resources and population horizons of expectation, and colonialism,
and, 163, 217, 221–222, 229n8; equality/ 431–433, 437–438
inequality and, 162–163, 217, 221–222, 227, hospice movement, 624, 697, 709nn4–5
848 • INDEX
Hsu, Elisabeth, 645n24 595n6; food shortages and, 447, 576–577,
humanitarianism: abolitionism and, 775; 581, 584, 589; grain hierarchies and,
adoptees and, 116, 117–120, 122–125; 447–448, 591–592; Green Revolution and,
al-Qireyne in refugee community and, 44; 580, 588–591; humanitarianism and, 447,
biopolitics and, 7; colonialism and, 577–578, 583–587; life and, 447, 576–578,
435–437; critiques of, 2; evidence-based 587–588, 594; malnutrition/undernutrition
knowledge and global for, 600; human and, 581–583, 595n7; modernity and, 577;
rights activism and, 130; human rights nutrition and, 592–593; politics and, 577,
activism during conflicts and, 130; hunger 580; politics/political power and, 447, 581,
and, 447, 577–578, 583–587; hunger and 583–584, 586; poverty and, 583–584,
colonialism and, 577–578; politics and, 254; 588–589, 591–594; public space and, 447,
psychosocial treatment programs and, 165, 576–578, 580, 581–582, 594; PUCL and,
302–310; Rajasthan and, 595n8; sexual/ 581–582; social issues and, 447, 580,
reproductive violence and, 136–139; 582–585, 595n6; starvation and, 447, 576,
suffering and, 2; UN and, 775–776; 578, 581–583, 586, 592, 595n7; subjectivity/
valuation of lives and, 627, 775–777, 781 ies and, 580; temporality/ies and, 576, 583,
Human Mortality Database (HMD), 787, 793, 594; “traditional” gathering/trading and,
800 582–584, 586–587, 593, 595n5, 595n9;
human rights: advance directives and, 681; civil vulnerabilities and, 584–585, 591; water
rights movement and, 162, 207, 209–213, (shortages) and, 447, 576–577, 586–587,
544, 552, 554n1; Declaration of Independ- 589–591, 593–594; waxing and waning
ence and, 346, 774–775; Declaration of the and, 447–448, 591–592
Rights of Man and, 346, 774; disability Hunt, Lynn, 774–775
rights movement and, 12, 446, 525–529; Hurd, Michael, 536
health-care rights and HIV/AIDS and, 256, Hurricane Katrina, 2005. See Katrina-related
263; homophobia and, 327n7; humanitari- deaths
anism and, 130; loss and, 476, 479, 485; hypochondria, and secular body, 337–339,
pharmaceutical rights and HIV/AIDS and, 343–345, 347, 349
256; psychosocial treatment programs hysteria, and secular body, 338, 344–345
and, 301–307, 309; reproductive rights and,
114, 130–134, 138–139; right to heal and, identity: adoptees and, 118, 125, 127; al-Qireyne
270–271, 273; right to health and, 270–271, in refugee community and, 144–145; ASDs
273, 281, 284; right-to-health litigation and, and, 9, 11–12, 164; biocitizenship and, 8–9,
255; right to medicines and, 270, 273, 280, 32n6; biosociality and, 9, 32n6; collective
284, 285n9; self-immolation and, 448, identification and adoptees and, 118, 125,
600–601, 604, 608, 612–613, 617n22, 127; cosmetic surgery after breast cancer
618nn28–29; valuation of lives and, 627, and, 383–384, 392, 394; deaf community/
774 activism and, 9–11, 164; disabilities and,
Human Rights Fund (HRF), 304–310 446, 533, 536; dying and, 703; existence
Humphrey, Caroline, 27–28 and, 9–15, 32n6, 164, 265; HIV/AIDS and,
Humphries, Jane, 804 9, 12–15, 164; immunology and, 355–357,
hunger: overview of, 447, 576–577, 593–594; 360–364; life/concept tension and, 450,
agriculture and, 447, 582–585, 588–591, 454–455, 459; normative death and, 648,
595n6; anthropology of, 578–580, 595n3; 657–658; organ transplant programs and,
aspirations/aspirational and, 589, 591; 422, 427; post-identity politics and, 126;
caste hierarchies and, 581–582, 584–588, psychosocial treatment programs and,
591, 593, 595n9; embodiment and, 580; 302–304, 306–309, 313; racial health
employment and, 582–584, 586, 591, disparities and, 544; sexual/reproductive
INDEX • 849
identity (continued) in-betweenness, and lonely deaths of elders,
violence and, 139–140; youth/death 664, 669, 671, 672
relation and, 759, 761–763. See also incarceration issues, 320–327, 547–548, 551–554
collective identification incest, 86–87, 90, 93–95, 98n5
idiosyncrasy in biology, 164, 273–274, 283–284, indifference, 161–162, 168, 176–177, 272–273,
675, 677 567
illegal/legal drugs, and racial health disparities, individual and world relation: overview of, 444,
542–543, 547–549, 552–553 463–464, 472–473; being-in-the-world and,
illness: DOTS TB program and disease control 444, 465, 470–473; Cartesianism and, 465;
and, 232, 236, 245; individual/world continuity and, 472; death and, 472;
relation and, 465–466, 468–469, 472, economic/financial insecurity and,
473n1; nursing home and, 698, 703–705; 465–466; everyday life and, 444, 465–468,
sick body/ies and, 331, 342–343, 345–347, 471–473, 473n1, 473n3; falling out of the
351; sick roles and, 272, 274–276, 278–279, world and, 444, 470–471, 473, 507;
284n5, 285n16, 286n18 funerals and, 472; given/givenness and,
imagining/reimagining: antiautobiographies of 444, 464–466, 470; illness and, 465–466,
adoptees and, 117–120; kinship and 468–469, 472, 473n1; laughter and, 444,
disabilities and, 527–529, 531–534; in late 467–468; ludic and, 466; “not-at-home”
modernity, 68, 79; life and death as and, 444, 471–472; personhood and, 465;
conjoined in late modernity and, 68, 79; phenomenology and, 471–472; poverty and,
poetic imaginaries of colonialism and, 465–470; precarity and, 465–466; security
433–438; poor birth mothers imagined as and, 444, 464, 468; social issues and, 465,
unfit and, 104–109; recovery from sexual 470; violence and, 444, 465–466, 468;
assault and work/employment and, work/employment and, 444, 463,
164–165, 290, 292–298, 299n3 466–468, 473
(im)possible lives of adoptees, 117, 120–121, individuality: biopolitics and, 27; cancer
123–125 outpatient facility and, 677, 692–694;
immortalism, and secular body, 342 combat-injured soldiers’ rehabilitation and,
immunology: overview of, 332, 354–355; agency 399–400, 403; death and, 17–18, 641;
of viruses and, 357–359; antibodies and, fragility of the body/life and, 29, 33n13;
358–363; associative recognition theory healers/healing and, 18, 33n11; individual
and, 355–356; autoimmune infections and, life story versus statistics and, 627, 770,
360; Cartesianism and, 356, 362; 777; life and, 3, 15–20, 27, 32nn8–9; life in
evolutionary paradox and, 361–362; language and, 28; medicalization of dying
genetics and, 363; identity and, 355–357, and, 677, 692–694; milieu and, 3, 16–20,
360–364; life and body/ies boundary and, 27, 32n9, 625; natural and social mutual
332, 354, 357; maternal-fetal relation and, absorption and, 4; normative death and,
332, 359–360; nonhuman life and, 332; 624, 653, 655; pain management and,
“nonself”/”foreignness” and, 332, 354–360, 186–187, 189; pathology and, 17–18;
362–363; repertoire paradox and, 361–362; police violence and, 493, 503, 506;
risk and, 332, 360, 361–363; self and, 332, psychosocial treatment programs and,
354–357, 359–363, 364n3; stem cell 302–304, 307, 309, 312–313; right-to-
biotechnologies and, 359–360; systemic health litigation and, 164, 255, 257–258,
network theory and, 355; viruses and, 332, 260, 263–265; self-immolation and
355–360, 362–363 suffering and, 448, 614; situation and
improvised explosive devices (IEDs), and event relation and, 27; some ones’ death in
combat-injured soldiers’ rehabilitation, Katrina hurricane and, 447, 560, 566–567,
401, 404, 406, 409, 411 569; violence and secular body/ies and,
850 • INDEX
345–347. See also individual and world intimacy/ies: addiction and, 165, 322; adoptees
relation and public space and, 123; combat-injured
inequality/equality. See equality/inequality; soldiers’ rehabilitation and, 400, 403–412,
justice/injustices 413n7; dying and, 624, 702–703, 710n19;
infanticide, 526, 528 lonely deaths of elders and, 624, 669–670;
infantilization, 407–408, 705, 707, 709n15 loss and, 476–477; mental health/illness,
infant mortality rate (IMR), 51, 63, 766n22, 445, 516, 522; police violence and,
821n14 496–498, 501, 506; sexual/reproductive
infants (newborn babies), 42, 83–84, 89–92, violence and, 44; waiting in clinics and
94–97, 149–150, 526, 528, 532 depersonalization of, 176; youth/death
infertility/fertility. See fertility/infertility relation and, 743, 750, 757, 762
informed consent, for clinical trials, 14, intracytoplasmic sperm injection (ICSI), 73–77,
275–276, 281, 285n14 80n2
Ingold, Tim, 470–471, 513 in vitro fertilization (IVF), 41, 68–74, 76–79,
insecurity and political violence (ensekirite), and 80n2, 536
psychosocial treatment programs, 301–304, Iraq war/postinvasion, 333, 401, 405, 413n8,
306–307, 309, 312–313, 314n2 414n11, 565, 776, 784
institutions: addiction and, 165, 317, 322; cures Islam (Muslims): Abraham/Ibrahim’s ritual
and, 161, 710n17; death and, 162–163, 623; sacrifice, 418, 422, 632; adoption
disabilities and, 528; dying and, 623; prohibition in, 73, 136; Alevism and, 372,
earthquake in 2010 relief and, 302, 379n2, 379n8; as ASHA workers, 59;
312–313; health/administrative costs and, assisted conception and, 68, 73–77, 80n2;
251, 255, 257; hope/hopelessness in Bengal and, 131, 617n19; biotechnologies of
medical, 697, 709n5; law/s and, 161; reproduction and, 68, 73–77, 80n2;
modernity and, 551; pain and, 161; contraception and, 61; death and, 632–633,
pharmaceutical spaces and, 161; public- 635, 637, 642; ethics and, 145; female
private interface in governmental, 251–252, sterilization and, 60–61; healers/healing
255–256, 262; racial health disparities and, and, 332, 367–369, 375–376; ICSI and,
543–545; recovery from disease and, 164, 73–77, 80n2; law/s and, 133–136, 136–137,
271, 273–274, 278–280, 285n15, 285n17; 138; life and death as conjoined and, 332,
reproductive health and childbirth in, 367; male infertility and, 73–77, 80n2;
48–51, 54–59, 61–62, 64n1; right-to-health martyrdom and, 479; MFPR and, 77–79,
litigation and, 162–163, 251–252, 255–257, 80n3; modernity and, 149, 332, 367–369,
262, 265; SRM and, 785, 804, 806, 817 375–376; nationhood and, 133, 140; organ
insurgencies, and colonialism, 334–335, 432–433 transplant programs and, 422–423,
Inter-Country Adoption Law (Adoption Law) of 425–426, 429n7; Pakistani political project
1972, 136, 138, 140n6 and, 131–133; personhood and, 138–140;
intergenerational conflict, and youth/death practices of, 131, 133, 139–140; Quran and,
relation, 626, 754–761, 764, 766nn24–25 145, 148–149, 332, 368; race and, 131;
intergenerational vortex of caretaking (IVoC), reproductive health and, 54, 57–61; sexual/
534–535 reproductive violence and, 133–136; stem
International Criminal Court Statute (Rome cell biotechnologies and, 68; tradition/s in,
Statute of the International Criminal 132–133; valuation of lives and, 773
Court), 130, 140n1
International Planned Parenthood Federation Jackson, Michael D., 31n1, 472, 653
(IPPF), 134–135, 140n5 Jain, S. Lochlann, 382–383, 393–394
intersubjectivity/ies, 156, 309, 456, 460, 516, Jains, and death, 632
518, 757–758. See also subjectivity/ies James, Deborah, 181n12
INDEX • 85 1
James, William, 472 570n1; embodiment and, 569–570; excess
Janani Suraksha Yojana (JSY), 49–54, 57 mortality rates and, 447, 560–566, 570n1,
Jaspers, Karl, 450, 454–455 571n10; experiential knowledge and, 447,
Jefferson, Thomas, 775 561–562; funerals and, 569–570; good/bad
Jews, 527, 531, 736, 773 death and, 447, 568–569; grief and,
Jewsiewicki, Bogumil, 762 568–569; Harvard University study and,
Jodha, N. S., 580 561–562, 571n8; indifference and, 567;
Johnson, Harriet MacBryde, 528 Katrina talk and, 560; kinship and, 569,
Jones, Meredith, 382–383 572n17; language and, 559–563, 565–567,
Joseph, Miranda, 665 569; legitimacy/illegitimacy and, 563,
joy (celebration), 62–64, 95–96, 334–335, 565–566; life and death as conjoined and,
431–434, 438, 706 447, 568–570, 572n17; local science of
justice/injustices: adoptees and, 115–116, mortality rate statistics and, 447, 563–567,
124–125; adoptions and, 101, 107–108; 572n11; memory and, 567–570; mourning
aspirations/aspirational and, 161, 165–166; and, 447, 569–570; numbers/enumeration
aspirations for, 161; biopolitics and, 254; and, 563; politics/political power and,
care/caregiving and, 30; civil rights 562–564, 571n10; poverty and mortality
movement and, 207; disabilities and, statistics and, 559, 567, 570n1; public
533–534; fragility of the body/life and, health and, 559, 564, 571n3; scientific
165–166; government frugality and knowledge and, 447, 560–563, 565–566,
markets versus, 253–254; HIV/AIDS and, 571nn7–8; situation and event relation and
226; ideals of, 111; life and milieu relation death and, 559, 570; some ones’ or
and, 19; racial health disparities and, individuals’ death and, 447, 560, 566–567,
544–545; right-to-health litigation and, 164, 569; spaces/places and, 447, 560, 565–567;
254–255, 257, 263–264, 266; sexual assault statistical wars and, 560–563, 571nn7–8;
victims and, 164, 290–292, 299; survival suffering and, 568; suicidality and,
and, 735; valuation of lives and, 773, 780. 561–562, 567–568, 571nn7–8; suicides and,
See also equality/inequality 447, 559–562, 571n4; survival of Katrina
“just living” everyday life, 164, 289–292, 295, and, 559, 568, 569, 570n2; temporality/ies
298–299 and, 447, 560, 565–567, 569; thick
description and, 564; tradition/s and,
Kafka, Franz, 270, 277–279, 576–578, 580, 594 569–570; visible/invisible and, 569–570;
Kamal, Sufia, 132 vitalism and, 566; vulnerabilities and, 559;
Kant, Immanuel, 774 whites and, 559, 567, 569, 570n2; WHO
karma, 626, 653–656, 733–735, 740n4 and, 562
Katrina-related deaths: overview of, 447, Kaufman, Sharon R., 273, 656
559–560, 570, 570nn1–2, 571nn3–4, 571n6; Keizer, Bert, 709n5
affects and, 567–568; agency and, 559–560, Keller, Eva, 644n17
567, 570n2; biopolitics and, 567; blacks Kelly, Tobias, 477–478, 486–487
and, 559, 567, 569, 570nn1–2; CDC and, Kendall, Laurel, 117, 119–120
447, 562, 564; class/es and, 559, 571n4; Kessler, Ronald, 561–562
collective identification and, 570; key act/s, 428
continuity and, 570; DDH and, 562, 564; kidney transplant programs, 419–420, 424–425
DHH and, 562, 564; DMORT and, 562, Kidron, Carol, 736
568; dying from Katrina/communicability Killick, Evan, 181n12
and, 447, 560, 567–568, 572nn16–17; Earth Kimbuta, André, 749
Institute of Columbia University and, 562; kinship: addiction and, 165, 317, 321–324,
elderly mortality statistics and, 559, 563, 327nn3–4; adoptees and, 115, 117–119,
852 • INDEX
121–122, 127; adoptions and, 102–111, 486–489; organ transplant programs and,
112n4; alleged parents and, 106, 108–110; 422–424; pain and, 612; pain/pain
al-Qireyne in refugee community and, 44, management and, 186–187, 612; poetic
143–145, 147, 150–151, 153–155; biotechnolo- speech of healers/healing and, 332,
gies and reproduction and, 79; boundary- 370–374, 377–378, 379nn2–7; self-immola-
violating flirtation and, 164, 294; tion and, 612; survival and, 734–735,
combat-injured soldiers’ rehabilitation and, 740nn7–9; touch/haptic and, 708. See also
401–403, 407–408; imagining/reimagin- communication
ing and disabilities and, 527–529, 531–534; Lanza, Adam, 205
incest and, 86–87, 90, 93–95, 98n5; Lapierre, Wayne, 205
Katrina-related deaths and, 569, 572n17; Laplanche, Jean, 156, 157n4
law/s and, 109–110; memory and, 121, 127; Larkin, Philip, 691
mental health/illness, 445, 511, 514–518, Latour, Bruno, 103
520–522; natal alienation and, 303, 309; laughter, 83–85, 87–88, 95–97, 162, 188–189,
obligation of, 115; or al-rahim and al-Qireyne 191, 196–200, 444, 467–468
in refugee community, 144–145, 154–155; Laugier, Sandra, 21, 26–30
police violence and, 498–499; psychosocial Lavater, Johann Kasper, 382
treatment programs and, 303, 306–309; law/s: overview of, 161–166; abortion law/s and,
“talking to” and, 292–294; youth/death 134–135, 137–139; adoptions and, 101–103,
relation and, 744–747, 751–752, 754–757. 106–107, 106–108, 111, 136–139, 140n6;
See also family Americans with Disabilities Act of 1990,
Kittay, Eva Feder, 12, 413n2, 533–534 413n9, 544, 554n1; cure and, 161, 164;
Klaits, Frederick, 752 evidence and, 102, 104, 111; Guardian and
Klein, Melanie, 385–386, 396n4 Wards Act of 1890, 136–139; Gun Control
Kleinman, Arthur, 31n1 Act of 1968, 213; health care and, 164, 253,
knowing/knowledge: adoptions and, 102, 107, 257, 260–265; Islamic, 133–136, 136–137,
109–110; death and, 629, 634, 643; 138; kinship and, 109–110; knowledge and
experiential, 447, 552–553, 561–562; expert/ adoptions and, 102–104, 107–108; location/
non-expert, 102, 161–163; scientific, 3, 5, 14, boundaries of, 102–103, 107; medicaliza-
447, 560–563, 565–566, 571nn7–8, tion of dying and, 625, 680–681; (neo)
641–642, 725n7; suicides and, 715–716, liberalism/modern liberal state and, 161;
719–721 normativity and, 110; Ordinance no. 5 of
Koselleck, Reinhart, 431–433, 773 1982, 136, 140n6; organ transplant
Kramer, Larry, 13 programs and, 425–427; Patient Protection
Król, Henryk, 276 and Affordable Care Act of 2010, 270–271,
Kübler-Ross, Elisabeth, 696–698, 703, 707, 547; police violence documentation for case
709n6 and, 501–503; recording/encoding truths
and, 102; recovery from disease and,
Lacan, Jacques, 29, 33n13, 449 271–272, 277–278, 281–284; right-to-health
Landsman, Gail, 528 litigation and, 251, 253–259, 261–263, 265,
language: al-Qireyne in refugee community and 271–272, 277–278, 281–284, 285n15; sexual
pain relation with, 146–147, 156; cancer assault victims and, 289–291, 295; sexual/
and, 186–187, 200, 202n17; dying and, reproductive violence and, 133–139, 140n5
700, 703, 707–708; form/s of life and, 3, Lawton, Julia, 706–707, 709n9
10–11, 21–29, 32n3, 334; grammar and, 24, laying out the body/ies for undertakers
26, 331, 333, 339–340, 351, 424, 481, 490, (afleging), 701–702, 709nn10–12, 710n19
512, 519, 715; Katrina-related deaths and, Leach, Edmund R., 632–633
559–563, 565–567, 569; loss and, 484, Lear, Jonathan, 29–30
INDEX • 85 3
Leavitt, Stephen C., 486, 489 ies and, 338–339, 342–343, 350–351; STS
legitimacy/illegitimacy: adoptions and, 101, and, 2; suicides and, 712–716, 718–722,
110–111; biolegitimacy and, 7–8; healers/ 724–725, 725n8; survival and, 500, 626,
healing and, 332, 373; hijras and, 83, 98n9; 730, 734, 736–738; thresholds of life and,
Katrina-related deaths and, 563, 565–566; 23, 30–31, 594; as worth living, 399–400,
loss and, 479, 482; mental health/illness, 404–406, 408, 414n12, 626, 743; youth/
512, 523; police violence and, 502; recovery death relation and, 626–627, 743, 749,
from disease and, 263, 280; sexual/ 750, 753, 763, 767n27. See also everyday
reproductive violence and, 132, 136–140 life; valuation of lives (worth of lives)
lesbianism, and cosmetic surgery after breast life, and concept tension: overview of, 443–445,
cancer, 392–395, 394 449–450, 461nn1–2; autonomy/self-auton-
letting die/making live, 627, 714 omy and, 445, 453; container-contained
Levi, Ron, 103 model and, 456–457; humanity and,
Lévi-Strauss, Claude, 87, 449, 630, 641, 757 443–444, 454; identity and, 450, 454–455,
Liberation upon Hearing in the Between (The 459; intersubjectivity/ies and, 456, 460;
Tibetan Book of the Dead), 651, 660n2 Kuranko of Sierra Leone and, 443, 451–454,
Lienhardt, Godfrey, 632 459–460; life within limits and, 459–460,
life: overview and definition of, 594; binary 461nn6–8; Maori of New Zealand and,
oppositions and, 630, 634, 641, 644n7, 453–454; materiality and, 450, 453;
659; biopolitics and, 4, 8, 14–15; body/ies maternal care and, 459–460, 461n7;
and, 332, 354, 357, 631, 644n9; the body’s migrant narratives and, 443, 457–458, 460,
boundary with, 332, 354, 357; combat- 461n8; migrants and, 443, 457–458;
injured soldiers’ rehabilitation and, 334, obligations and, 445, 459–460; Oedipal
399–400, 403–408, 413n4, 414n12; cycles project and, 457–459; ordinary expression
of, 71, 428, 526–529, 534–537, 706; as versus conceptual schema and, 3, 33n12;
between two deaths, 501–502, 504, 507; patriarchy and, 459–460, 461n7; phenom-
death’s boundary with, 67, 630; death enology and, 455–456; psychic and, 456;
versus, 631, 644n9; disabilities and, 413n4, symbolism and, 450, 453–454, 459;
446, 526–529, 534–537; dying and, 30, 45, tradition/s and, 457–460; violence and,
706; fragility of, 3–4, 28–30, 165–166, 443, 443, 451–453; Warlpiri of Australia and,
527; healers/healing and, 338–339, 443, 451–454, 456
342–343, 350–351, 376–377; hunger and, life and death as conjoined: adoptees and, 117;
447, 576–578, 587–588, 594; immunology adoption files and, 101; al-Qireyne in
and, 332, 354, 357; individuality and, 3, refugee community and, 148, 152;
15–20, 27, 32nn8–9; life beside itself and, ancestors and, 594; binary oppositions and,
713–714, 724–725; life expectancy rates and, 630, 634, 641, 644n7, 659; biotechnolo-
779–781; limits and, 459–460, 461nn6–8; gies for reproduction and, 47, 67–68,
loss and, 444–445, 476, 480, 482, 67–71, 79; boundary and, 67, 630; in
486–487, 489–490; milieu and, 3, 16–25, Buddhism, 1; childbirth and, 41; colonial-
27, 32n9; modernity and, 68, 79, 628; ism and, 335, 432–433, 435; in contempo-
natural and social mutual absorption and, rary world, 1; death and, 631, 635; form/s of
3–4; organ transplant programs and, life and, 30; healers/healing and, 376–377;
419–420, 422–423, 427, 428; police Katrina-related deaths and, 447, 568–570,
violence and, 493, 495–497, 500–504, 572n17; life as circulating and, 633, 644n11;
506–507; psychosocial treatment programs making live/letting die and, 627, 714;
and, 165, 301–306, 308–309, 312; quality mental health/illness, 523; normative death
of, 9, 253, 270–271, 282, 305, 545, 548, 594, and, 658–659; organ transplant programs
606–607, 749, 753, 767n27; secular body/ and, 422, 428; philosophy and, 1–2; police
854 • INDEX
violence and, 500–501; psychosocial “not-at-home” and, 669; post-3/11 and,
treatment programs and, 302, 304, 667–672, 672n5; precariat/precarious
308–309; reproductive health and, 64; proletariat and, 666, 672n2; precarity and,
self-immolation and, 600, 607, 610; 664–667, 669–670, 672n2; rebirth/
sexual/reproductive violence and, 131, 134, reborn and, 671; regional living rooms or
140; spirit and, 594; stem cell biotechnolo- chiiki no chanoma and, 669–670;
gies and, 47, 71; subjugated relations and, relationless society or muen shakai and,
152, 303; suicides and, 712–715, 719–721, 663–664, 667, 669–670; self-sufficiency
725; survival and, 500, 626; waxing and and, 668; social issues and, 624, 663–672,
waning and, 527; youth/death relation and, 672n2; socially withdrawn youth and, 624,
627, 750, 763, 767n27 664, 669; solitude and, 663–664, 669;
life beside itself, 713–714, 724–725 suffering and, 664; suicide and, 624, 664,
life expectancy rates, 779–781 669; survival and, 663; symbolism and,
life itself. See everyday life 671; temporality/ies and, 664; valuation of
Lim, Stephen S., 50 lives and, 664, 668; visible/invisible and,
Lingis, Alphonso, 664 669; vulnerabilities and, 664
Link, Bruce, 207 longevity, 534, 662–664, 772
Linker, Beth, 399–400 longing (kajjarniq), and suicides, 722–723,
little death, 68, 70–73, 79 726nn11–12
Litzinger, Ralph, 614n2 loss: overview of, 444–445, 475–477, 488–490;
Llewelyn-Davies, Melissa, 182n13 addiction and, 165, 318–321, 323–325,
local, the, 15–17, 19–20, 32n8, 79–80, 185–186, 327n1, 327n3; adoptees and, 115–116, 118,
219, 225–226, 228n4, 229n14, 447, 121, 123–127; agency and, 477; alternative
563–567, 572n11, 627, 762 expressions of, 125–127; anger and,
Lock, Margaret M., 15, 17, 19–20, 32n8, 67, 482–484; belonging and, 444, 475; care/
630, 656 caregiving and, 483–485, 488; chronic
Lombard, Jacques, 635 crisis and, 489; collective identification
lonely deaths (kodokushi) of elders: overview of, and, 475, 479–480, 484, 486–489;
663; abandonment through disinterest conjugal loss and, 475–477, 480–490,
and, 664–668, 671–672; belonging and, 490n1; cosmetic surgery after breast
664, 667–668, 669; care/caregiving and, cancer and, 383, 385, 389; death and, 445;
664, 667, 669–670; cemeteries/burials detainees or al-asra’ and, 444, 475–476,
and, 667; continuity and, 665; corpse 478–480, 483; disabilities and, 531; dying
donations or “gifts” and, 667; demographic and, 700, 703, 705–707, 706; embodiment
statistics and, 666; documentation and, and, 444–445, 482; endurance or sumoud
662–663; economic/financial insecurity and, 444–445, 477, 486–488; ghosts and,
and, 666, 669; everyday life and, 663, 479, 490n1; grammar and, 481, 490; grief
669; family corporate capitalist system and, 445, 479, 486–487, 490n1; healers/
and, 665–666, 669, 672n3; grief and, healing and, 332, 368; historical narrative
664, 668; homelessness and, 665, 669, for, 477–480; humanity and, 479; human
671–672; hope/hopelessness and, 666, rights and, 476, 479, 485; individuality
672; in-betweenness and, 664, 669, 671, and, 445; intimacies and, 476–477;
672; intimacies and, 624, 669–670; language and, 484, 486–489; law/s and,
longevity and, 662–664; loss and, 669; 445; legitimacy/illegitimacy and, 479, 482;
marketization and, 624, 664, 666; life and, 444–445, 476, 480, 482,
materiality and, 666, 669; NALC and, 486–487, 489–490; lonely deaths of elders
670; NEET and, 664; (neo)liberalism and, and, 669; loss and, 444–445; loss of
664, 666; NHK and, 663, 667–668; politics and, 444–445, 476, 484–488,
INDEX • 85 5
loss (continued) Margolles, Teresa, 743
487–488; martyrdom and, 478–480, 479; marketization: inequality of disease/death and,
medicalization of dying and, 694; men as 162–163; lonely deaths of elders and, 624,
detaineess statistics and, 479; mental 664, 666; of plasma, 162–163, 223–224;
health/illness and, 445, 475–476, 481, private TB drug marketization and, 233,
482–483, 488, 516, 518, 520, 522–523; 239–242, 245–246, 248nn6–7; right-to-
mourning and, 476–477, 479–482, 484, health litigation and, 253–255, 263–264; TB
486–490; normative death and, 648, 660; drugs and, 162–163, 232–233, 239–242,
pain and, 481; police violence and, 494, 245–246, 248nn6–7; waiting in clinics
497–498, 500–502, 506–507; pregnancy and, 169–170, 181n6. See also (neo)
and al-Qireyne in refugee community and, liberalism
153; psychosocial treatment programs and, Martinez, Katherine “Katie,” 392–395, 394,
308–311; sanity/”mad” and, 484, 488; 397n14
self-immolation and, 604; subjectivity/ies martyrs (aš-šuhadâ’), and loss, 478–480
and, 444, 477–478; suffering and, Marx, Karl, 178–179, 680
476–479, 482, 485–486, 488; survival and, masculinity, 306, 334, 385–387, 386, 392–395,
730; temporality/ies and, 476, 480; 394, 400, 403, 405–408, 412. See also
victimhood/victimization and, 478–479; femininity, and cosmetic surgery after
violence and, 477–478, 480; voiced/ breast cancer
unvoiced effects and, 475, 477, 480, 489; mass killings, 162, 205–206, 213–214, 632
“we” and, 444, 489; widows of martyrs materiality: addiction and, 317, 323, 328n8; the
and, 475–476, 480–484, 487, 489, 490n1; body/ies and, 12, 303; colonialism and,
wives of detainees and, 475–476, 480, 431–432, 434, 437–438; combat-injured
484–490; women as detainees and, soldiers’ rehabilitation and, 399–400,
479, 487; youth/death relation and, 743, 411–412; death and, 631–634, 637–638,
752, 763 640–641, 643, 645n27; disabilities and,
Loughner, Jared, 205–206 544, 554; healers/healing and, 374,
Lourde, Audre, 384 376–377; life/concept tension and, 450,
Lovell, Anne M., 47 453; lonely deaths of elders and, 666, 669;
lovers, and relation with hijras, 83, 85–86, 89, psychosocial treatment programs and,
92–93 302–303, 305, 308–309, 311; reproduction
ludic, 432–433, 466, 626–627, 752, 754, and, 41, 56; secular body/ies and, 338;
762–763 survival and, 732, 735; valuation of lives
and, 772, 778; youth/death relation and,
Macleods, 241–245, 248nn6–7 744, 748–749, 754, 757, 760–761, 763
“mad”/sanity, 153, 162, 205–206, 211–212, 214, maternal-fetal relation, 332, 359–360
484, 488 maternal mortality rate (MMR), 41–42, 48–50,
Maine, Henry, 342 49, 62, 64n1, 77, 780, 785, 805
makeovers, 382–383, 388–389 Mathews, Andrew, 107
making live/letting die, 627, 714 Mavalankar, Dileep V., 64n1
Makley, Charlene, 616n10 Mbembe, Achille, 303, 368, 375, 378
Malcolm X, 209, 211–213 McGovern, George, 404–405, 413n9
Malinowski, Bronislaw, 86–87, 90, 93, 98n5 McGranahan, Carole, 614n2
Mander, Harsh, 581 McGuinty, Patrick, Jr., 340–341
Mao Zedong, 222, 643, 737 McMillan, Della, 457
March 11, 2011 earthquake/tsunami/nuclear Medawar, Peter, 354
meltdown, 667–672, 672n5 Médecins du Monde, 775
marginalization, 185, 190, 421–422, 429n7 Médecins sans Frontières, 775
856 • INDEX
media, 100–101, 108, 110, 418, 420, 429nn2–3, and, 648, 652, 654; organ transplant
751, 753, 760, 767n26 programs and, 422–423; psychosocial
mediation forms, and death, 624, 629–630, treatment programs and, 165, 304–305,
643, 644n2, 648–651 307, 310–312; sexual/reproductive violence
medical anthropology (anthropology of and, 140; suicides and, 723–724; survival
medicine), 2, 5, 20–21, 31n1, 161, 730 and, 730, 732, 735–736; texts for, 432–433
medically terminated pregnancies (MTPs), menstrual regulation (MR) law, 135, 138–139,
71–72 140n5
medicine/medical technologies: overview of, mental health/illness: overview of, 445, 511,
161–166; cancer and, 162, 190–196, 200, 522–523; Agra Institute of Mental Health
202n13, 202n15; colonial medical archive and, 510, 512–514, 522; aspirations/
and, 431–433, 435–438; death and temporal- aspirational and, 511, 517–518; blame and,
ity/ies and, 657; exceptional-medicines 514, 517–518; care/caregiving and, 517;
program for diseases and right-to-health circuits and movement and, 514–517,
litigation and, 252–253, 256, 258–264, 262; 520–522; conjugal loss/relations and,
human rights and, 256–257, 264–265; 475–476, 481, 482–483, 488, 510, 514–517,
idiosyncrasy in biology and, 164; marketi- 520–521; connections and, 514, 518–519,
zation and, 162–164, 186, 190, 239, 522; continuity and, 501, 519; corpse
245–246, 253, 255–256, 263–264; medical donations for dissections and, 429n7;
education/knowledge and, 18, 33n11, dance and movement and, 518–520,
161–162, 164; medicalization critiques and, 522–523; death and, 523; ECT and, 517;
161, 207, 212; medicalization of dying and, embodiment and, 519, 523; everyday life
675, 678–679, 683, 686–687, 689, and, 445, 510–512, 514, 518, 520; grammar
692–693, 695; medical model, and and, 512, 519; habitus and, 511; healers/heal-
disabilities and, 526–529; medico-legal ing and, 513–514; intersubjectivity/ies and,
sexual assault forensic intervention and, 516, 518; intimacies and, 445, 516, 522;
289–291; needs/nature imagined and kinship and, 445, 511, 514–518, 520–522;
reproductive health and, 42, 56, 58–59, legitimacy/illegitimacy and, 512, 523; life
65nn2–3; normative death and, 656–657; and, 522–523; loss and, 445, 516, 518, 520,
painkillers and, 162, 190–196, 200, 522–523; mass killings and, 162, 205–206,
202n13, 202n15; pharmaceutical industries 213–214; modernity and, 511; motion/
and, 163, 232–233, 237–242, 246, movement and, 512–518, 520–522; myths
248nn6–7; preventive medicine versus, and, 511, 515, 520, 523; pacing and, 512–513,
163–164, 253, 256; public health care costs 516; police violence and, 496, 503–505;
and, 273, 282; right-to-health litigation and presence/absence and, 445, 513–516,
temporality/ies of, 260, 266; right to 518–520, 522–523; sanity/”mad” and, 153;
medicines and, 270, 273, 280, 284, 285n9; schizophrenia and, 510, 512, 516–518, 520,
SRM and, 785–786, 806; TCM healing 523; self and, 511, 513, 518, 522–523; solitude
and, 642; temporality/ies and death and, and, 522; subjectivity/ies and, 517–518;
656–657 symbolism and, 511–512, 518; temporality/
memory (remembering): addiction and, ies and, 513–518, 520, 522–523; therapy/
319–321, 327, 327n6; adoptees and, therapeutics and, 513, 517, 519; tradition/s
120–121, 127; colonialism and, 431–434, and, 511; treatment services and, 322, 324;
437–438; ethics of survival and, 502, 706; visible/invisible and, 519
forgetting versus, 291–292, 311–312; Métraux, Alfred, 308
Katrina-related deaths and, 567–570; migrant narratives, 443, 457–458, 460, 461n8
kinship and, 121, 127; memory books by milieu, 3, 16–25, 27, 32n9, 45, 625
adoptees and, 120–121; normative death militan (Haitian activists), 304, 306–308, 307
INDEX • 85 7
military conflicts/operations, 150–151, 155–156, 41–42, 48, 49, 50, 62, 64n1, 77, 780;
156n3, 628, 775–776, 784, 788, 818n10 valuation of lives and, 779–781; youth/
mind, body, soul (Geist, Körper, Seele), 640–641, death relation and, 753
645n25 Mosse, David, 51
miscarriages, 61, 64, 77, 144–146, 148, 151–152, motherhood and birth mothers: addiction and
154–156 mother-daughter relationship and, 165,
(mis)fortune (kruh), and survival, 735, 740n10 318, 322, 324–327; adoptees and, 115–116,
missing girls/women (sex selection) at birth 120; adoptions and, 104–109; disabilities
statistics, 47, 563, 571n10, 628, 786, 818n3 and, 528–529, 536; gender violence and
Mitchell, Graham, 359–360 adoptees and, 116, 120; mother-infant
modernity: adoptees and, 118, 123; cruelty and, attachment and, 135, 137–139; reproductive
30; death and, 635; death and late, 68, 79, health and, 64; sexual/reproductive
628; disabilities and, 526–527, 529, 532, violence and, 137–138; trauma and adoptees
536; good death and, 623; healers/healing and, 115–116, 120
and, 332, 368–370, 372–375, 378, 379n6; motion/movement, and mental illness, 512–517,
hunger and, 577; institutions and, 551; 512–518, 520–522
Islam and, 149, 332, 367–369, 375–376; Moulds, Donald, 536
Islamic, 332, 367; late, 68, 79, 628; mental mourning: addiction and, 320; bereavement
health/illness and, 511; “newness” and, 2; and, 696–700, 707, 709n6; Katrina-
organ transplant programs and, 419, related deaths and, 447, 569–570; loss and,
421–423, 426, 428; psychosocial treatment 476–477, 479–482, 484, 486–490;
programs and, 304, 309; race and, 6; racial matanga and, 744–748, 758, 761–763,
health disparities and, 551–552; secular 764nn1–10, 765nn12–15, 766n21, 766n23;
body/ies and, 337–338, 340–345, 347–350; normative death and, 648, 652, 654, 659;
self-immolation and, 604–607, 610, police violence and, 494, 501, 507;
617n19, 617n25; sexual/reproductive psychosocial treatment programs and, 309;
violence and, 132–133, 139; subjectivity/ies rural areas and, 744–748, 762, 764nn1–10,
and, 551–552; suicides and, 626, 722, 724, 765nn12–15, 767n27; self-immolation and,
725, 726n10; survival and, 738, 739; 602; stages of bereavement and, 696,
valuation of lives and, 773–774, 781; 698–699, 709n6; youth/death relation
valuation of lives in institutional practices and, 744–748, 751–757, 758, 761–763,
of, 4; whites and, 552; youth/death relation 764nn1–10, 765nn12–15, 766n21, 766n23
and, 758, 762. See also (neo)liberalism Mous, Cornelie, 696, 698, 700
Monk, Ray, 344 Moyn, Samuel, 775
Montaigne, Michel de, 461n1 mucopolysaccharidosis (MPS), 263–264
Montgomery, Joanna, 392 Mueller, Anders, 123–125
moon model, and death, 635–636, 643, 644n17, multidrug-resistant tuberculosis (MDR-TB),
645n19 232–235, 241–247, 247n1, 248nn6–7,
morals. See ethics 249n9
Moraru, Christian, 701 multifetal pregnancy reduction (MFPR), 77–79
Morel, E. D., 436 Murakami Ryū, 670
morgues, and youth/death relation, 748, 752, Muslims. See Islam
760–761 myths, 31, 86–92, 95–97, 98n5, 118, 124, 511,
Morris, Errol, 386 515, 520, 523, 623, 629, 634–636
mortality rates: overview of, 779–780; children
and, 753, 765n20, 766n22; HIV/AIDS and, Nagin, Ray, 564
753; IMR and, 51, 63, 766n22; local science Nancy, Jean-Luc, 349–350
and, 447, 563–567, 572n11; MMR and, Nanda, Serena, 90–91
858 • INDEX
Naoroji, Dadabhai, 577 nonchoice/choice, and adoptees, 118, 120, 124
natal alienation, 303, 309 non-Christians, and valuation of lives, 627,
National Association for the Advancement of 773–774
Colored People (NAACP), 210, 212–213 nonhuman life, 148, 178, 332, 594
National Health Service (NHS), 167–168 noninvasive prenatal testing (NIPT), 530, 537n2
nationalism: adoptions and, 102–104; al-Qireyne non-medical attendants (NMAs), and combat-
in refugee community and, 143; combat- injured soldiers’ rehabilitation, 401–402,
injured soldiers’ rehabilitation and, 407–408
333–334, 399–400, 403, 413n7; Islamic “nonself”/”foreignness,” and immunology, 332,
nationhood and, 133, 140; personhood and, 354–360, 362–363
44; race and, 6; self-immolation and, Norbu, Tenzing, 600–601, 609, 611, 614
599–600, 602, 615n7, 615n9, 616n11; Nordstrom, Carolyn, 202n17
sexual/reproductive violence and, 44, normative death: overview of, 623–624,
132–133, 138, 139–140; survival and, 731, 735 648–649, 659–660; agency and, 655; bad
National Rural Health Mission (NRHM), death and, 656; “between” or bardo and,
48–49, 49, 50, 53 651–652, 660n2; the body/ies and, 624,
National Tuberculosis Program (NTP), 234, 653, 657–658; care/caregiving and, 624,
236–237, 236–239, 243, 245–247 652, 659; collective identification and, 624,
natural and social mutual absorption, 3–5, 9, 15, 653, 655, 658; consciousness and, 648, 652,
23, 30–31, 32n3, 44, 140, 165–166, 334 654–655, 657; continuity and, 658–659;
necropolitics, 303, 399, 412, 413n9, 758, 764 cremation and, 650, 654, 657–658; death/
Nelson, Debra, 388–392, 390 rebirth cycle or saṁsāra and, 651–652,
(neo)liberalism, 122–123, 125; combat-injured 658–659, 660n2; dying and, 648,
soldiers’ rehabilitation and, 334, 399–400, 649–652, 654–655, 660n2; ego and,
402–404, 406, 410, 412; cruelty and, 30; 654–655; fashioning/unfashioning and,
equality and, 12; HIV/AIDS and, 221–222, 652–655; funerals and, 650, 652, 654,
225; law/s and, 161; lonely deaths of elders 657–658; ghosts and, 652, 659–660; good
and, 664, 666; maternal care and, 461n7; death and, 649–651; grief and, 652; identity
rights liberalism and, 3, 9, 12; right-to- and, 648, 657–658; individuality and, 624,
health litigation and, 253–256, 265; secular 653, 655; injury and treatments and, 650;
body/ies and, 337, 340–342, 345, 347, karma and, 653–656; life and death as
349–350, 352n7; subjectivity/ies and, conjoined and, 658–659; loss and, 648,
327n7; valuation of lives and, 773; waiting 660; medicine/medical technologies and,
in clinics and, 161; youth/death relation 656–657; memory and, 648, 652, 654;
and, 759. See also marketization; modernity mourning and, 648, 652, 654, 659; pain
neonatal intensive care units (NICUs), 532 and, 651, 658; personhood and, 624, 652;
nervousness, 335, 433, 435–438 poiesis and, 652–655; rituals and, 648,
Nestor, Paul, 206 651–655, 657–659; sacrifice and, 657; self
neurodiversity movement and ASDs, 9–12, 164, and, 652, 654; sensibility and, 652; social
446, 535 issues and, 648, 652, 655; spectral and, 652;
newborn babies, 42, 83–84, 89–92, 94–97, suffering and, 653–654, 658; temporality/
149–150, 526, 528, 532 ies and, 656–659, 660n4; transformations
“newness,” 2–5, 32n3, 41 and, 648, 652, 655; videotape as mediation
Nguyen, Vinh-Kim, 15, 17 form and, 624, 648–651
Nietzsche, Friedrich, 714 normativity: biopolitics and, 4; combat-injured
Niven, Larry, 688 soldiers’ rehabilitation and, 399–400,
nocturnal wake ritual, 744–746, 748, 752, 402–405, 407–412, 413n7, 413n10, 414n14;
764n7 cosmetic surgery after breast cancer and,
INDEX • 85 9
normativity (continued) identity and, 422, 427; Islam and, 422–423,
333, 389; disabilities and, 446, 527–528, 425–426, 429n7; key acts and, 428;
532–533; dying and, 625, 698, 704–706; kidneys and, 419–420, 424–425; language
family/ies and, 102, 104, 107–108, 110; and, 422–424; law/s and, 425–427; life
law/s and, 110; “normal science” in global and, 419–420, 422–423, 427, 428; male
and, 14; vitality and, 16–18, 32n10 suicides and, 421; marginalization and,
North-South divide, 14, 186, 776 421–422, 429n7; media and, 418, 420,
“not-at-home,” 444, 471–472, 669. See also fall 429nn2–3; memory and, 422–423;
out of the world modernity and, 419, 421–423, 426, 428;
Not Dead Yet (NDY), 525–526, 528–529 obligations and, 424, 429n6; organ
Noyes, Arthur P., 208 donation and, 418, 422–423; personhood
numbers/enumeration, 448, 563, 600–602, and, 421–422; politics/political power
605–607, 611–613, 617n22, 617n27, and, 421, 425, 429n4; public space and,
618n28, 628 418–422, 425–426, 428; religions and, 334,
nursing home (verpleeghuis). See dying 418, 422–424; rituals and, 419, 422–424;
Nussbaum, Martha C., 413n2, 533–534 sacrifice and, 334, 418, 422–424; sensibility
nutrition: death and, 635; hunger and, 592–593; and, 425–426, 428; stigmatization and,
malnutrition/undernutrition and, 105, 334, 429n7; subjectivity/ies and, 422–424;
579–580, 581–583, 582–583, 595n7; suicides and, 334, 418–426, 428, 429n2,
reproductive health and, 51, 56; SRM and, 429n4; symbolism and, 334, 419, 422–424,
785, 804, 806 428, 429n6; tradition/s and, 418, 421–422;
the unconscious and, 423
Obama, Barack, 270, 552, 676, 686 Other, the, 494, 507, 632–633, 724, 773
obligation/s, 91, 104, 149, 283–284, 424, Oz, Amos, 717
429n6, 445, 459–460
Oedipal project, 457–459 Padmanabhan, P., 64n1
organ donation (organ bağıșı), 418, pain/pain management: cancer and, 162, 186,
422–423 189–191, 201nn9–10, 202n11, 202n13,
Organisation for Economic Co-operation and 202n15, 202n17; dying and, 697, 700;
Development (OECD), 786, 805–807 global discourse and, 185, 189–190; hijras
organ sales, and commodification, 419 and, 95–97; humanity and, 338; individual-
organ transplant programs: overview of, 334, ity and, 186–187, 189; institutional
418–419, 428; affects and, 334, 426; complexes and responses to, 161; language
biological and, 334, 426; biopolitics and, and, 146–147, 156, 186–187, 200, 202n17,
425, 427–428, 429n7; brain death and, 612; laughter and, 162, 188–189, 191,
419, 424–428; cadaver donations and, 334, 196–200; loss and, 481; marginalization of,
420, 422, 424–427, 429n7; cards for 185, 190; medical interventions as painful
donors and, 420, 429n2; collective and, 162, 186, 187–189, 193–196,
identification and, 419, 422–423, 425, 428, 201nn9–10; medicalization of dying and,
429n6; commodification and organ sales 689–691; normative death and, 651, 658;
and, 419; consent cases and, 419–420; pain medications and, 542–543, 547–549,
death and, 419, 421, 422, 424–428, 630, 551, 553–554, 555nn8–9; pain politics and,
643, 644n8, 645n32; endogamic practices 186–187, 202n11; police violence and, 494,
and, 418, 428n1; ethics and, 630, 644n8; 500, 502–504; racial health disparities and,
Feast of the Sacrifice and, 418, 422; female 542–543, 547–549, 547–553, 551, 553–554,
suicides and, 334, 420–421, 429n2, 429n4; 555nn8–9, 555n9; reproductive health and,
forgive/forgiven and, 422–423, 428; gift 57–60, 62–64, 65n3; secular body/ies and,
and, 424, 429n5; grammar and, 424; 331, 337–339, 342–344, 348; symbolism
8 60 • INDEX
and, 187; WHO protocols for, 189. See also Piombo, Sebastiano del, 386, 386
suffering placebo research, and clinical trials, 275, 285n13
palliation, 182n16, 185–187, 189–192, 195–196, plasma-fraction industry, and HIV/AIDS, 163,
198–200, 202n13, 697; autopalliation and, 217, 220–224, 228n1, 229n8, 229n13
196, 198–199 Plato, 17, 382, 652
Pandolfo, Stefania, 727n15 pleasure-in-inflicting-pain-and-death, 347–349
Parsons, Talcott, 272, 279, 284n5, 285n16, plenary adoption (adopción plena), 103
286n18, 356 poiesis, 652–655
pathology/ies, 16–18, 17–18, 27, 32n10, 333, 389, police violence: overview of, 445, 493–494,
446, 546–549, 552, 554, 555nn6–7 506–507; autobiographical voice and, 505;
patients: compliance/noncompliance of, 164, being-in-the-world and, 445, 497–498,
273, 277–280, 285n16; doctor relations 506; care/caregiving and, 504; conjugal
with, 271–273, 277–280; recovery from relations and, 495–496, 498–499;
disease and, 271–272, 277–278, 281–284; conversations as everyday actions and,
right-to-health litigation and, 164, 255, 497–500, 506; death and, 494, 496–497,
257–258, 260, 263–265, 271–272, 277–278, 500–501, 500–502, 503–504, 507;
281–284; waitng in clinics and, 169–176, displacement experience and, 502–506;
181nn9–11 ethics of survival and, 502; falling out of
patriarchy, 459–460, 461n7 the world and, 507; funerals and, 494–495;
Patterson, Orlando, 303 futurity and, 501–502; grief and, 494,
Paulson, Dana, 692 497–498, 506–507; guilt and, 496–497;
penitential practices, and psychosocial historical narrative for, 494–495;
treatment programs, 302, 304, 308, 313 individuality and, 493, 503, 506; intimacies
performativity, 21, 84, 90–91, 147, 602, 616n10, and, 496–498, 501, 506; kinship and,
623, 626–627, 631, 634, 755–756, 762, 498–499; law/s and, 501–503; legitimacy/
766n24, 767n27 illegitimacy and, 502; life and, 493,
Perrenoud, Alfred, 778 495–497, 500–501, 500–504, 506–507;
personhood: combat-injured soldiers’ rehabilita- loss and, 494, 497–498, 500–502,
tion and, 399–400, 403, 406, 411, 413n2; 506–507; mental health/illness and, 496,
death and, 641; disabilities and, 413n2, 528; 503–505; mourning and, 494, 501, 507; the
dying and, 704–706; embodiment and, 15, other/Other and, 494, 507; pain and, 494,
304; individual/world relation and, 465; 500, 502–504; PTSD and, 500; solitude
Islam and, 138–140; little deaths and and, 499; suffering and, 494, 507; survival
biotechnologies of reproduction and, 68; and, 500–502; “we” and, 507; witnesses of
normative death and, 624, 652; organ violence and, 501
transplant programs and, 421–422; politics/political power/secular authority:
psychosocial treatment programs and, 304, agency and, 333, 371, 379n4; democracy
309; reincarnation and, 641; sexual/ and, 301–304, 306, 311; ethics and, 443,
reproductive violence and, 44, 137–140, 447–448; healers/healing and, 332–333,
138–140. See also citizenship 367–378, 378n1, 379n4; HIV/AIDS and,
Petryna, Adriana, 14, 772 218, 222, 227; humanitarianism and, 254;
Pfeiffer, Naomi, 72 hunger and, 447, 577, 580, 581, 583–584,
Phelan, Jo, 207 586; individual violence and, 346;
phenomenology, 185, 190, 197, 199, 455–456, Katrina-related deaths and, 562–564,
471–472, 544, 554 571n10; life and, 4, 15; loss of politics and,
phenylketonuria (PKU), 261–262, 262, 264 444–445, 476, 484–488; maternal care
philosophy, 1–2, 12, 21 and, 461n7; medical costs and, 163–164,
Pinto, Sarah, 53, 63 253–255, 259–260; organ transplant
INDEX • 86 1
politics/political power/secular and, 309; valuation of lives and, 780;
authority (continued) waxing and waning and, 448
programs and, 421, 425, 429n4; patriarchy pregnancy: al-Qireyne and, 145–147, 151–152,
and, 461n7; politics of recognition and 154–155; assisted conception and, 42, 47,
biological conditions and, 3, 5, 9–15, 68–69, 71–79; fetal demise/pregnancy loss
32n6, 164; punitive/protective duality and, 76–78, 80n1; forced, 130, 133–134, 138;
and, 32n4, 352n4; right-to-health litigation hijras’ pregnancy and childbirth question
and, 163, 253–259, 255, 262–263; saintly and, 83–84, 87–90, 91, 93–95, 98n8; IVF
authority relation with political power and, and, 41, 68–74, 76–79, 80n2; loss and
368, 370, 373–374, 377–378; schizophrenia al-Qireyne in refugee community and, 153;
and black activist politics and, 162, 207, maternal-fetal relation during, 332,
209–213; self-immolation and, 447–448, 359–360; nationalism and, 131, 139;
599–601, 606, 609, 617n23, 618nn28–29; out-of-quota, 219, 225; poverty and, 47;
sexual/reproductive violence and, 134, prenatal tests and disabilities and, 525,
138–140, 141n7; trauma and, 313; violence 529–532, 537n2; reproduction biotechnolo-
and psychosocial treatment programs and, gies and, 77; reproductive health and, 48,
301, 303; youth/death relation and, 626, 50, 54, 59–61, 64; risk and, 47, 61, 77
743, 755, 757–758, 761, 764, 766n25 prenatal tests, 525, 529–532, 537n2
population control/management, 5–7, 60, 110, presence/absence, and mental illness, 445,
162, 163, 206–214, 217, 221–222, 229n8. 513–516, 518–520, 522–523
See also security preventive medicine, 163–164, 253, 256
Porter, Roy, 206 primary health centers (PHCs), 51–55, 58–59,
Porter, Theodore, 566 61–63, 64n1
postgenocide, 536–537, 736 Prindle, Cathy, 206
posttraumatic stress disorder (PTSD), 165, private practitioners/health care, 50–51, 54,
302–304, 307, 310, 312, 413n8, 500, 733 57–58, 176–178, 232–233, 235, 237–238,
potential/potentiality, and recovery, 273–274 251–252, 255–257, 262, 264
Pottier, Johan, 580 pro-choice movements, 130, 140n1, 446
poverty: addiction and, 317, 321–322, 327n2; pro-life (“right-to-life”) movements, 69, 130,
adoptees and, 115, 118, 124, 127n1; 140n1, 446
adoptions and, 100–101, 104–110; psychic, 124, 144, 331, 340, 347, 456, 714, 733,
al-Qireyne in refugee community and, 152; 740n3
death and, 635; excess mortality rates and psychosocial treatment programs: overview of
Katrina-related deaths and, 559, 567, and, 165, 301–302, 313; agency and, 305,
570n1; hijras and, 83, 95; HIV/AIDS and, 312; ancestors and, 303; care/caregiving
221, 227–228; hunger and, 583–584, and, 302, 304, 308; Christianity and, 165,
588–589, 591–594; individual/world 302, 312; confessional therapeutics and,
relation and, 465–470; psychosocial 302, 304–305; conversion experiences and,
treatment programs and, 301, 304, 165, 309, 312; death and, 302–304,
306–307, 309, 312; sexuality and, 83; 308–309; death and recovery and, 165;
survival and, 729–730 democracy/politics of democracy and,
Povinelli, Elizabeth, 181n6, 322, 327n7, 301–304, 306, 311; divine spirit or lwa and,
402–404, 407, 664, 672 303; DSM and, 302; earthquake in 2010
precarity: overview of, 29, 33n13, 443–448; and, 302, 312–313; embodiment and, 303,
individual/world relation and, 465–466; 304, 309–312; forgetting and, 311–312;
lonely deaths of elders and, 664–667, funerals and, 308; guilt and, 303, 308–309,
669–670, 672n2; precariat and, 666, 311; healers/healing and, 165, 305, 312–313;
672n2; psychosocial treatment programs humanitarianism and, 165, 302–310;
8 62 • INDEX
human rights and, 301–307, 309; identity public-private interface and right-to-health
and, 302–304, 306–309, 313; individuality litigation and, 251–252, 255–256, 262;
and, 302–304, 307, 309, 312–313; insecurity secrecy versus, 140; self-immolation and,
or ensekirite and political violence and, 600–602, 611, 613, 615n7, 615n9, 616n11;
301–304, 306–307, 309, 312–313, 314n2; starvation and, 581; youth/death relation
intersubjectivity/ies and, 309; kinship and, and, 626, 743–744, 752, 760, 766n21,
303, 306–309; life and, 165, 301–306, 766n23, 767n26
308–309, 312; loss and, 308–311; masculin- purgatorial spaces, 165, 302, 304–306, 309,
ity and, 306; materiality and, 302–303, 305, 311–313
308–309, 311; memory and, 165, 304–305,
307, 310–312; militan and, 304, 306–308, qualitative/quantitative terms, 771, 780
307; modernity and, 304, 309; mortuary queer/queerness, 83, 122, 401, 411–412, 413n4
and, 303, 308–309, 312; mourning and, Quetelet, Adolphe, 771
309; natal alienation and, 303, 309; queuing, and waiting in clinics, 168, 173, 176,
necropolitics and, 303; organized violence 180, 181n9
and, 301, 309; penitential practices and, quotidian experience. See everyday life
302, 304, 308, 313; personhood and, 304,
309; political violence and, 301, 303; Rabinow, Paul, 5, 9
poverty and, 301, 304, 306–307, 309, 312; race: adoptees and, 115, 119, 120; biopower and,
precarity and, 309; PTSD diagnosis and, 6, 9; bricolage and, 6; colonialism and,
165, 302–304, 307, 310, 312; purgatorial 436, 438; combat-injured soldiers’
spaces and, 165, 302, 304–306, 309, rehabilitation and, 413n6; cosmetic surgery
311–313; rebirth/reborn and, 165; risk and, after breast cancer and, 333, 382; modernity
301, 306–307, 312; rural and, 307–308, 310; and, 6; nationalism and, 6; racism and, 6,
security/secure spaces and, 301–302, 304, 213, 327n7, 333, 382; schizophrenia and,
306–307, 309; self and, 304–306, 306–307, 162, 206–214; security/population control/
309, 312; sexual assault and, 305, 309; management and, 7, 162, 206–214; sexual/
shame and, 303, 306–307, 314n5; social reproductive violence and, 131, 139;
death and, 303; social issues and, 303; souls valuation of lives and, 627, 773–776,
of the dead and, 302–303, 308; spaces/ 779–780
places and, 165, 301–302, 304–307, 309, racial health disparities: overview of, 446,
311–313; subjectivity/ies and, 304, 306–307, 553–554; ADA and, 544, 554n1; aesthetics
309; suffering and, 302–306, 309, 313; and, 544–545, 548; aspirations/aspirational
temporality/ies and, 302, 304–308, 310, and, 547, 551; biopolitics and, 545–547, 554;
312; therapy groups and, 304–310, 314n2; black pathology and, 446, 546–547, 549,
therapy/therapeutics and, 301–302, 552, 555nn6–7; care/caregiving and, 446,
304–306, 313; torture and, 303, 305; 543–547, 554n4; citizenship and, 446,
tradition/s and, 304–305, 308–309; TRM 551–552; civil rights movement and, 544,
and, 313, 314n5; viktim and, 302–310, 313; 552, 554n1; class/es and, 548, 550–551;
visible/invisible and, 303; vulnerabilities clinic and, 543, 545–549, 551–553;
and, 301, 307 consumerism and, 543; discrimination and,
psychotherapeutic pedagogies, 143 543–545, 548, 551–552, 554n1; educational
public space: disabilities and, 525–529, 531, achievement and, 543, 549–554; equality
533–535, 537; funeral rituals and, 752; and, 544; evidence-based medicine/
hunger and, 447, 576–578, 580, 581–582, treatments and, 446, 543–546, 548, 554,
594; organ transplant programs and, 555n9; evidence-based research/knowledge
418–422, 425–426, 428; public attitudes/ production and, 544–546, 554; experiential
beliefs and schizophrenia and, 206–208; knowledge and, 552–553; health-care access
INDEX • 86 3
racial health disparities (continued) events, 736; experimental therapies and,
and, 545–546; Healthy People 2010 and, 164, 273, 277–280, 285n16; futurity and,
545–546; homelessness and, 548, 550–551; 273; genetic disorder cases and, 273,
identity and, 544; illegal/legal drugs and, 282–284; global and, 164, 271–276, 280,
542–543, 547–549, 552–553; institutions 284, 285n12; health insurance and, 270,
and, 543–545; justice/injustices and, 284; idiosyncrasy in biology and, 164,
544–545; life and, 446, 545, 548, 552–553; 273–274, 283–284; indifference and,
modernity and, 551–552; pain and, 542–543, 272–273; informed consent for clinical
547–553, 555n9; pain medications and, trials and, 275–276, 281, 285n14; institu-
542–543, 547–549, 551, 553–554, 555nn8–9; tions and, 164, 271, 273–274, 278–280,
second-order phenomenon/emergent 285n15, 285n17; legitimacy/illegitimacy
phenomenon and, 544, 554; self and, and, 263, 280; obligations and, 271–273,
547–550, 549–550; sickle-cell anemia and, 275–280, 283–284, 285n14, 286n18;
446, 542–543, 546, 548–550, 552–554, patient compliance/noncompliance and
555n9; subjectivity/ies and, 544, 546–547, experimental therapies and, 164, 273,
551–552, 554; suffering and, 548–549; 277–280, 285n16; patient-doctor relations
symbolism and, 544; visible/invisible and, and, 271–273, 277–280; patient-litigants
551; whites and, 547–548, 552; work/ and, 271–272, 277–278, 281–284; placebo
employment and, 543, 546–552; World War research in clinical trials and, 275, 285n13;
I and, 527. See also discrimination potential/potentiality and, 273–274; power/
racism, 6, 213, 327n7, 333, 382 powerlessness of clinicians in clinical trials
Raman, Parvathy Sankara, 64n1 and, 271–273, 282–283; quality of patient
Ramonet, Ignacio, 346, 352n2 outcomes and, 270–271, 282; right to heal
Randive, Bharat, 48, 50 and, 270–271, 273; right to health and,
Rao, Vidya, 63 270–271, 273, 281, 284; right-to-health
rape. See sexual assault litigation and, 271–272, 277–278, 281–284;
Rapp, Emily, 531–532 right to medicines and, 270, 273, 280, 284,
Rappaport, Roy, 645n19 285n9; sick roles and, 272, 274–276,
Rawls, John, 780 278–279, 284n5, 285n16, 286n18; state
Ray, Debraj, 786, 807 judicial domains and, 271; subjectivity/ies
Read, Kenneth, 770–771, 777, 781 as patients and, 164, 271–277, 281–283. See
real/unreal, the, 28–29, 339 also cure; healers/healing
rebirth (reborn): biotechnologies for reproduc- Reddy, Gayatri, 87, 89–91, 97n1
tion and, 71; cosmetic surgery after breast refuge spaces, and colonialism, 335, 433–434,
cancer and, 333, 383–384; death and, 633, 437–438
636; death and rebirth cycle or saṁsāra regional living rooms (chiiki no chanoma), and
and, 651–652, 658–659, 660n2, 732; HIV/ lonely deaths of elders, 669–670
AIDS and, 706; lonely deaths of elders rehabilitation programs, 132–134, 137, 139–140
and, 671; psychosocial treatment programs Rehab Program, the (Victim Assistance
and, 165; self-immolation and, 602, 607 Rehabilitation Program), 304–305, 310
recovery: overview of, 164, 270–274, 283–284; reincarnation, 640–642
aspirations for, 161; clinical trials and, 14, relationless death (muenshi) of elders, 624, 663,
164, 263–264, 271–278, 281–284, 285n9, 667–668
285nn12–14, 687; clinic and, 164, 271; cost relationless society (muen shakai), 663–664,
of/expensive medicines and public health 667, 669–670
and, 273, 282; cures and, 164, 270, 274, relationships as technology, 41
280, 283–284; death and, 165; ethics and, relatives’/older women’s role, and reproductive
270–273, 275–280, 282–283, 285n14; from health, 54–55, 57, 59, 61–63
8 64 • INDEX
religions: death and, 630, 632–633, 635, 637, medical condition and, 62–64; JSY
642; organ transplant programs and, 334, program and, 49–54, 57; materiality and,
418, 422–424; religious activities space 56; maternal body/ies and, 64; medical
and, 374–376; secular body/ies and, 331, innovation and multiple outcomes and, 51,
338–339, 341–344, 708; survival and, 730, 55–56, 58; medical intervention needs/
732, 734, 738, 740n4, 740n16, 741n20 nature imagined and, 42, 56, 58–59,
religious activities space (dergâh), and healers, 65nn2–3; methodology and, 52; missing
374–376 women statistics and, 47; MMR and, 48,
remembering. See forgetting; memory 50, 62, 64n1; models for, 63–64; mother-
repertoire paradox, and immunology, 361–362 hood and, 64; Muslims and, 54, 57–61;
reproduction of household, and HIV/AIDS, nutrition and, 51, 56; older women/
163, 225 relatives’ role and, 54–55, 57, 59, 61–63;
reproductive future/s: al-Qireyne in refugee operations as multivalent and, 60; overt/
community and, 44, 155–156; combat- covert coercion by the state and, 61–62;
injured soldiers’ rehabilitation and, pain management and, 57–60, 62–64,
399–401, 403, 405, 407, 409–411, 413n10, 65n3; PHCs and, 51–55, 58–59, 61–63,
414n14; hijras and newborn babies and, 42, 64n1; population control/management
83–84, 91–92, 94–95; reproductive health and, 60; pregnancy and, 48, 50, 54, 59–61,
and, 60–61; sexual/reproductive violence 64; private health care and, 50–51, 54,
and, 131, 138–140. See also futurity 57–58; programs by the state to reduce
reproductive health: overview of, 41–42, 47–48, MMR and, 48, 49, 52–53; public health care
62–64; actions and certainty of the state and, 51–55, 58–59, 61–63, 64n1; risks of
and, 41–42, 47; ambulance service for childbirth and, 47, 59–60, 64; rural and,
patient transport to, 50–51, 53–54, 59; 48, 53–54; sexual and reproductive futures
ancestors and, 63; ANMs and, 49, 52, 56, and, 60–61; sterilization and, 55, 60–62;
60, 62–64; antenatal care and, 47–49, 51, traditional birth attendants or dais and, 55,
54; ASHA workers and, 48–49, 52–59, 61, 58–59, 62–63; traditional practices and
63; biomedical and, 53, 60; birth songs reforms and, 50–52, 54, 58–62; training
and, 63; bricolage of technologies and programs by the state and, 48, 53–54, 62;
tradition/s and, 63–64; care/caregiving Uttar Pradesh and, 51–52
and, 47–48, 50–59, 62–63, 64n1; caste reproductive rights, 114, 130–134, 138–139
hierarchies and, 53–54, 56–57, 62; CHCs Research Centre for Torture Victims against
and, 52, 56, 59, 61–64; childbirth and, Torture (RCT, now Danish Institute), 483
47–64; and colonialism, 334–335, 432–433; resilience system, and survival, 730
communication and, 53–54; conditional respite experience, and colonialism, 335,
cash-transfer program and, 49–50, 55–59; 433–434, 437
continuities/discontinuities in state reverie (dream), 143–144, 148, 153–155, 334–335,
programs and, 52–53; contraception and, 432–438, 625–626, 712–713, 719–721, 725,
61–62; corruption experiences and, 58; 734, 738
death and, 64; economic hierarchies and, Richards, Audrey F., 579, 584
56–57; ethics and, 47; everyday life and, 47, Richards, Naomi, 67
64, 68–70; family-planning programs and, Richardson, Samuel, 348
48, 49, 52–53, 60–61; family/relatives as Richardson, Sarah, 356
symbolic capital and, 55–56; Gujarat and, Richter, Simon, 385–386
51–54; health care differences and, 56; Ricoeur, Paul, 731–732
Hindus and, 54–55, 59, 61; IMR and, 51, 63; rights liberalism, 3, 9, 12
institutional deliveries and, 48–51, 54–59, right-to-health litigation: overview of, 163–164,
61–63, 64n1; joy/celebration versus 255, 264–266, 271–272, 281, 283;
INDEX • 86 5
right-to-health litigation (continued) medicine/medical technologies and, 260,
biopolitics and, 253–254, 264–265; care/ 266
caregiving and, 260–265; cerebral ataxia “right-to-life” (pro-life) movements, 69, 130,
case and, 252–253, 256, 258, 261–262; 140n1, 446
chronic hepatitis C cases and, 259–260; risk: overview of, 8; adoptees and, 115–116, 120;
clinical trials and, 164, 263–264, 271–273, childbirth and reproductive health and, 47,
275–280; clinic and, 253–254, 257; 59–60, 64; combat-injured soldiers’
consumer versus patient-citizens and, rehabilitation and, 406, 408, 410; cure
252–253, 256–258, 257, 261–262, 264–265; and, 14; desires and, 28; economic survival
discrimination and, 256–257; equality and, and, 14, 164–165, 296–298; hijras and, 86,
164; evidence-based medicine and, 257; 94, 97; HIV/AIDS and, 220–221, 225,
exceptional-medicines program for 229n7; immunology and, 332, 360,
diseases and, 252–253, 256, 258–264, 262; 361–363; MFPR and, 78; moral hazard and
genetics cases and, 261–262, 262, 273, health insurance and, 279, 285n17;
282–284; health-care access and, 257; population control/management and, 6,
historical narrative for, 255–257; HIV/AIDS 110; pregnancy and, 47, 61, 77; psychoso-
and, 259; human rights and, 255; identity cial treatment programs and, 301, 306–307,
relation to existence and, 164, 265; 312; SRM and, 628, 784, 786–787,
individuality and, 164, 255, 257–258, 260, 805–806, 808–810, 818n5; work/
263–265; inequality and, 162–163, 257, employment and sexual assault victims
262–263; institutions and, 162–163, 251, and, 164–165, 296–298
255, 257, 265; justice/injustices and, 164, rituals: brother-sister incest and, 87; death and,
254–255, 257, 263–264, 266; law/s and, 623, 630, 632–635; normative death and,
163–164, 251, 252, 253–259, 261–263, 265, 648, 651–655, 657–659; organ transplant
278; marketization and, 253–255; medical programs and, 419, 422–424; self-immola-
costs and, 163–164, 251–255, 257–260, 273, tion and, 448, 602, 607–609, 616n16;
282; MPS case and, 263–264; (neo) survival and, 626, 732–733, 735, 738–739,
liberalism and, 253–256, 265; obligations 740nn10–11, 741n18
and, 283–284; open-source anarchy and, Roach, Joseph R., 570
262–263; para-infrastructures and, Rochereau, Seigneur Tabu Ley, 751, 753, 760
254–255, 261, 264–265; pharmaceutical/ Rome, ancient, 349, 593–594, 759, 774
biomedical markets and, 255, 263–264; Rome Statute of the International Criminal
pharmaceuticalization of health and, Court (International Criminal Court
163–164, 253, 255–256; pharmaceuticals Statute), 130, 140n1
rights and, 256–257, 264–265; PKU case Rose, Nikolas S., 8–9, 12
and, 261–262, 262, 264; politics and, 163, Rosenkrantz, Barbara, 689
253–259, 255, 262–263; preventive versus Rospabé, Philippe, 460
pharmaceutical treatments and, 163–164, Rosson, Gedge, 387
253, 256; privatization of health care and, Rousseau, Jean-Jacques, 777
255–257, 264; public-private interface in Royle, Edward, 339
governmental institutions and, 251–252, Ruel, Malcolm, 632–634
255–256, 262; quality of life and, 253; rural areas, 48, 53–54, 163, 222, 229n9, 626,
recovery from disease and, 271–272, 676, 744–748, 761–762, 764nn1–10,
277–278, 281–284; shame and, 282; 765nn12–15, 767n27. See also urban
social issues and, 253–254, 257, 261–262, centers
262; subjectivity/ies and, 255, 262,
264–266; suffering and, 253; SUS and, sacredness, 627, 730, 738–739, 772–773, 777,
255–256, 261; temporality/ies and 781
8 66 • INDEX
sacrifice: Abraham/Ibrahim and, 418, 422, 632; 161–162, 205–207, 209–214; visible/
adoptees and, 124; biological regeneration invisible and, 207–208, 213; whites and,
within rituals of death and, 2; biotechnolo- 206, 208–210, 212
gies of reproduction and, 70–72, 79; science and technology studies (STS), 2, 5, 30,
Christianity and, 632–633, 773–774; death 32n3
and, 623, 631–634, 633, 636, 639, 645n22; Sebald, W. G., 479
gift and, 632–633; normative death and, secrecy, 140, 218–220, 222, 228n2, 642
657; organ transplant programs and, 334, secular, 332–333, 367–378, 369, 378n1, 708
418, 422–424; the other/Other and, security, 3, 5–8, 14, 32n5, 68–71, 79, 301–302,
632–633; sacrificial donation or kurban 304, 306–307, 309, 435–438, 444, 464,
bağıșı and, 418, 422; self-immolation and, 468. See also population control/manage-
600, 603–604, 615n5, 615n9, 616n16; ment
valuation of lives and, 773–774; youth/ self: addiction and, 313, 326; adoptees and,
death relation and, 758–759, 763 115–119, 121–123, 127; affective self-determi-
Sade, Marquis de, 346 nation and, 118–119, 122–123, 600–601,
sadism, 345–347 612–614, 618nn28–29; al-Qireyne in
sadness and joy (sukh dukh) sharing, 95–96 refugee community and, 145, 149, 153–154;
Sahlins, Marshall, 143, 565, 572n17, 731 buffered, 338, 340; dying and, 697, 700,
saints, 332–333, 367–368, 370–374, 377–378, 703, 705–707; efficacy and, 549–550;
379n3, 379n5, 379n9, 383–386, 386, 395, empowerment and, 118–119; Enlighten-
396, 397nn5–7; evliya and, 332, 367–368, ment and, 363, 364n3; fashioning and, 121,
370–374, 377–378, 379n3, 379n5, 379n9 149, 254; healers/healing and, 338, 340;
Salgues, Camille, 33n12 immunology and, 332, 354–357, 359–363,
sanity/“mad,” 153, 162, 205–206, 211–212, 214, 364n3; improvement and, 333, 382,
484, 488 387–388, 388; mental illness and, 511, 513,
Sarkozy, Nicolas, 779 518, 522–523; mortification and, 309, 312;
Sartre, Jean-Paul, 449–450, 460, 653 negation and, 115–117, 119; normative death
Saunders, Cicely, 697–698, 700, 703, 707–708, and, 652, 654; the other/Other and, 773;
709n4 reflection and, 304–306; reliance/
Scarry, Elaine, 186–187, 189 sufficiency and, 399–400, 403, 406–407,
Schelling, Thomas, 627, 777 410–411, 547–550, 668; sacrifice and, 312,
Scheper-Hughes, Nancy, 506, 579–580 423, 615n9; suicides and, 714, 724; survival
Schiavo, Terri, 526, 537n1 and, 741n18; transformation and, 306–307,
schizophrenia: overview of, 162, 205–207, 309, 312; valuation of lives AND, 773;
213–214; Black Power and, 162, 209–212; waiting in clinics and, 169
blacks and, 209–212; civil rights move- self-immolation: overview of, 447–448,
ment and, 162, 207, 209–213; docility of 599–602, 614n2, 614n4, 615nn5–7,
whites and, 162, 206–210, 212; DSM and, 617n27; affects and, 600–601, 612–614,
208, 210–211, 213; equality and, 210; FBI 618nn28–29; being-in-the-world and, 604,
and, 209, 212–214; gun violence and, 162, 617n19; blame and, 601–602, 615n9;
205–206, 212–213; medicalization of Buddhism and, 448, 602–604, 607–608,
violence and, 207, 212; medical racism 613–614, 615n5; collective identification
and, 213; motion/movement and, 512, and, 603–604, 613, 616n15; communica-
516–518, 520, 523; public attitudes/beliefs tion and, 602, 616n10; Dalai Lama and,
and, 206–208; race and, 162, 206–214; 599–603, 607–608, 615n9; death and,
sanity/”mad” and, 162, 205–206, 211–212, 448, 599–600, 602–604, 607, 610,
214; victimhood/victimization of schizo- 613–614, 616n12, 616n15; embodiment
phrenics and, 206, 214; violence and, and, 448, 604, 610–611; ethics and,
INDEX • 86 7
self-immolation (continued) 627–628, 785, 788, 807; military conflicts/
447–448, 601, 604–614, 618n28; evidence- operations and, 628; missing women by
based knowledge and, 600, 604–606, age and, 786; missing women statistics
617n22; global discourse and, 600, and, 47, 786; MMR and, 785; numbers/
616n10, 762; human rights and, 448, enumeration and, 628; nutrition and, 785;
600–601, 604, 608, 612–613, 617n22, OECD and, 786, 805–807; postransition
618nn28–29; individuality and suffering societies and, 628, 786, 818n2; public
and, 448, 614; language and pain and, 612; health and, 628, 785, 817; risk and, 628;
life and, 447–448, 600–602, 604–612, statistical life and valuation of lives and,
607, 610, 615n9, 616n11, 617n22; loss and, 627, 777–781; WHO and, 628, 784, 786,
604; men and, 615n6; modernity and, 788, 807–808, 808, 810, 812, 812, 814–816,
604–607, 610, 617n19, 617n25; mourning 816–817, 821n14; women’s status and, 628,
and, 602; nationalism and, 599–600, 602, 785, 817; World Bank and, 785–786
615n7, 615n9, 616n11; numbers/ sexual and reproductive violence: overview of,
enumeration and, 448, 600–602, 43–44, 130–131; abandoned children and,
605–607, 611–613, 617n22, 617n27, 136; abortions and, 130, 132–135, 137–140;
618n28, 628; performativity and, 602, adoptions and, 132, 134–137, 139, 140n6;
616n10; politics/political power and, biopolitics and, 131, 134, 138–139; children’s
447–448, 599–601, 606, 609, 617n23, personhood and, 44, 138–140; cleansing
618nn28–29; public space and, 600–602, and, 135, 137–139; desires and, 140;
611, 613, 615n7, 615n9, 616n11; rebirth/ family-planning programs postwar and,
reborn and, 602, 607; rituals and, 448, 131, 135; feminists and, 132–134; forced
602, 607–609, 616n16; sacrifice and, pregnancy and, 130, 133–134, 138; gender
600, 603–604, 615n5, 615n9, 616n16; and, 130–132; heterogeneity and, 137, 139;
social issues and, 448, 601, 618n29; humanitarian interventions and, 136–139;
statistics and, 599, 614n4, 615nn5–6; identity and, 139–140; intimacies and, 44;
suffering and, 448, 604, 612, 614; therapy/ IPPF and, 134–135, 140n5; Islam and, 133,
therapeutics and, 610; tradition/s and, 599, 136, 139–140; judicial silence and, 138;
609; violence and, 601–602, 607–610, law/s and, 133–139, 140n5; legitimate
609–610, 612, 615n9, 617n22, 617n25; sexualities and, 132, 137–139; life and death
virtue/virtuous deaths and, 448, 602–604, as conjoined and, 131, 134, 140; memory
610, 613, 616n12, 616n15; visible/invisible and, 140; modernist agenda and, 132–133;
and, 615–616, 618n28; voiced/unvoiced motherhood and, 137–138; mother-infant
effects and, 599, 614n2; witnessing/ attachment and, 135, 137–139; nationalism
witnesses and, 448, 612; women and, 600, and, 44, 131–133, 138, 139–140; natural and
615n6. See also self social mutual absorption and, 44, 140;
Sellars, Wilfrid, 464 Pakistani political project and Islam and,
Sen, Amartya, 578–579, 592 131–133; personhood and, 137–138; politics/
sensibility/ies, 115–117, 119, 344–345, 348, political power and, 134, 138–140, 141n7;
425–426, 428, 652 public secrecy versus memory of, 140; race
September 11, 2001 terrorist attacks, 75, 401, and, 131, 139; rape against men and, 133;
682, 772, 776–777 rape as war crime and, 130; rehabilitation
sex ratio of mortality (SRM): overview of, 41, program for women and, 132–134, 137,
627–628, 784–787, 817; health of 139–140; reproductive futures and, 131,
populations and, 785, 817; institutions and, 138–140; reproductive rights and, 130–134,
785, 817; Iraq postinvasion era and, 784; 138–139; shame and, 44; statistics and, 44,
medicine/medical technologies and, 131; symbolism and, 133; torture and, 132,
785–786; middle-income countries and, 134; tradition/s in Islam and, 132–133;
8 68 • INDEX
vulnerabilities and, 140; vulnerabilities and shame, 44, 86–87, 114, 116, 127n1, 282, 303,
political power and, 140; war heroines or 306–307, 314n5, 319, 681, 735
birangonas raped women and, 132–134, Sharma, Sanjay, 578
139–140, 140n3; war of 1971 and, 44, 131, Shim, Janet, 549
139, 775; wartime rape and, 44, 130–132, Shiva, Vandana, 591
137, 139 Shklovsky, Viktor, 743
sexual assault (rape): overview of, 164–165, Shunsuke, Serizawa, 669
298–299; bodying/bodied forth and, 299, sickle-cell anemia, 446, 542–543, 546, 548–550,
299n4; boundary-violating flirtation and, 552–554, 555n9
164, 294; colonialism and, 435–436; court Siegel, Lee, 88, 94, 96–97
case and, 289–291, 295; co-workers and, Sierra Leone, Kuranko of, 443, 451–454,
296–297; economic/financial insecurity 459–460
and, 292, 299n2; forced pregnancy and, silence, 138, 162, 192–196, 200, 202n15, 324,
130, 133–134, 138; forgetting and, 291–292; 735–736
gender and, 165, 297–298; hack taxi Simmel, Georg, 91
drivers and, 164–165, 296–298; imagin- Simon, Frank, 209, 211
ing/reimagining recovery and future work/ Simone, AbdouMaliq, 762
employment and, 164–165, 290, 292–298, Singer, Peter, 526, 528
299n2; justice/live justly and, 164, Singh, Bhrigupati, 3–4, 30–31, 32n4, 291–292,
290–292, 299; “just living” everyday life 352n4, 447, 591–592
and, 164, 289–292, 295, 298–299; kinship Sistema para el Desarrollo Integral de la Familia
and, 164, 291–294, 299n3; medico-legal (DIF), 100–104, 111nn1–2
forensic intervention and, 289–291; situation and event relation, 5, 27–29, 559, 570
against men, 133; parolees/ex-offenders’ skin-deep beauty, 382, 384, 395
work/employment and, 294, 299n3; Slezak, Sheri, 390–391
psychosocial treatment programs and, 305, social issues: adoptees and, 125; agency and,
309; risk at work/employment and, 322, 327n7; al-Qireyne in refugee commu-
164–165, 296–298; sexual contract and, nity and, 153; biosociality and, 3, 8–9, 12,
165, 297–298; social issues and, 165, 32n6, 443; the body, 7, 87, 125; cancer and,
297–299; statistics and, 44, 131; subjectiv- 162, 187, 191, 194–200, 694–695;
ity/ies and, 291–292; suicide and, 297; colonialism and, 7–8; combat-injured
“talking to” and kinship and, 292–294; soldiers’ rehabilitation and, 334, 406–407,
violence/threat of violence and, 164, 289, 414n13; disabilities and, 11, 532; dying
291, 296; vulnerabilities and, 164, 289, and, 624–625, 698–700, 703, 706–707;
295, 297–298; as war crime, 130; wartime embodiment and, 198–199; form/s of life
rape and, 44, 130–132, 137, 139; work/ and, 3–4, 21, 23; healers/healing and, 347,
employment and, 164–165, 290, 292–298, 352n4; hijras and, 86, 88, 92; HIV/AIDS
299n3 and, 218, 262, 706; hunger and, 447, 580,
sexuality: better off dead and, 413n3; combat- 582–585, 595n6; individual/world relation
injured soldiers’ rehabilitation and, 334, and, 465, 470; lonely deaths of elders
399–401, 407–411, 413n10; differences and, 624, 663–672, 672n2; natural and
and, 83, 90–91, 97nn1–2; gender and, 15; social mutual absorption and, 3–5, 9, 15,
pedagogy and, 85, 88, 93, 97; poverty and, 23, 30–31, 32n3, 44, 140, 165–166, 334;
83; sex selection at birth statistics and, 563, normative death and, 648, 652, 655;
571n10, 628, 818n3; sexual/reproductive nursing home and, 624–625, 698–700,
violence and, 132, 137–139; social contract 703, 707; psychosocial treatment programs
and, 297–298 and, 303; right-to-health litigation and,
Shakya, Tsering, 615n9, 616n12 253–254, 257, 261–262, 262; self-
INDEX • 86 9
social issues (continued) Atatürk or ruh and, 332, 367, 372;
immolation and, 448, 601, 618n29; sexual thresholds of life and, 30–31, 594;
assault victims and, 165, 298–299; sick wandering spirits/souls or pret and,
roles and, 272, 274–276, 278–279, 284n5, 733–734
285n16, 286n18; social death and, 117, 120, staffing and staff ’s responsiveness, and waiting
218, 303, 406–407, 414n13, 703, 706; SRM in clinic, 170–171, 174–175, 177–178, 180,
and, 628, 786, 818n2; survival and, 732, 181nn11–12
734, 739; valuation of lives and, 772, “standing persons” (tsangan’olo) coins, and
780–781; youth/death relation and, 743, death, 637–639, 645n20, 645n23
752–753, 755, 758–759, 761, 766n25. See Stanek, Jiri, 274, 276
also specific social issues starvation, 447, 576, 578, 580–583, 586–587,
socially withdrawn (hikikomori) youth, 624, 592, 595n7, 729–730
664, 669 state of abandonment (estado de abandono)
social workers, and nursing home, 625, 696, status, 106
699, 709n16 statistical life, 627, 777–781
Soeba, Lama, 603–604 statistical wars, and Katrina-related deaths,
soft violence, 151–152 560–563, 571nn7–8
solitude, 411, 499, 522, 663–664, 669 stem cell biotechnologies, embryonic, 14, 42,
Solomon, Andrew, 533 47, 68–73, 79, 359–360
some ones’ (individuals’) death, 447, 560, Stephens, Kevin, 564–565
566–567, 569 sterilization, and reproductive health, 55, 60–62
Sontag, Susan, 199–200, 358, 383 Stewart, Kathleen, 653
soul, 2, 30, 95–96, 302–303, 308, 343–344, 631, stigmatization, 235, 238, 334, 429n7
640–641, 645n25, 652, 733–734, 751 Stoler, Anne, 6–7
Souza, Paula Pinto de, 253, 260, 263, 265, 278 Stoller, Paul, 182n13
spaces (places): cancer and, 162, 187, 191, Stolnitz, George J., 789
194–200; cancer outpatient facility and, Strathern, Marilyn, 173, 641, 726n12
683–684, 694; colonialism and, 335, Strauss, Anselm L., 694, 697
431–438; dying and, 700, 706; jinn, 145; street children (bashege), 760
Katrina-related deaths and, 447, 560, Strong, John, 658–659
565–567; land and, 730, 736–739, 740n12, structural violence, 14, 107, 161, 175. See also
740nn15–16, 740nn15–17; purgatorial, 165, violence
302, 304–306, 309, 311–313; religious subjectivity/ies: adoptees and, 119, 125–127;
activities space or dergâh and Zöhre Ana citizenship and, 161–162, 168, 178–180,
and, 374–376; suicides and, 715–716, 724, 182nn15–18; colonialism and, 431, 433, 435,
725n5, 726n13; transitional space in clinics 438; ethical, 444, 477–478, 731; healers/
and, 179, 182n17 healing and, 368–370, 372; hijras as
Spacks, Patricia Meyer, 345 desiring subject and, 91; hunger and, 580;
spectral (ghosts), 2, 30, 479, 490n1, 643, intersubjectivity/ies and, 156, 309, 456,
644n2, 652, 659–660, 730, 732, 737 460, 516, 518, 757–758; mental health/
Spinoza, Baruch, 453–454, 653 illness and, 517–518; modernity and,
spirit: healers/healing and, 332, 367, 372; life 551–552; (neo)liberalism and, 327n7; organ
and death as conjoined and, 594; and transplant programs and, 422–424;
possession and dis/possession, 44, 143, psychosocial treatment programs and, 304,
153, 634, 636–638, 641–642; psychosocial 306–307, 309; racial health disparities and,
treatment programs and, 303; sacred 544, 546–547, 551–552, 554; recovery from
energy and, 730, 738–739; spectral and, 2, disease and, 164, 271–277, 281–283;
30, 652, 751; spirit and, 635–641; spirit of right-to-health litigation and, 255, 262,
870 • INDEX
264–266; secular body/ies and, 339; grammar and, 715; Katrina-related deaths
secular body/ies and hypochondria and, and suicidality and, 447, 559–562, 561–562,
339; sexual assault victims and, 291–292; 567–568, 571n4, 571nn7–8; knowing and,
the subject and the world and, 153; suicides 715–716, 719–721; life and, 712–716,
and, 716–717, 720, 724, 726n12; whites 718–722, 724–725, 725n8; lonely deaths of
and, 552 elders and, 624, 664, 669; longing or
sublunary form of life/world, and death, 636, kajjarniq and, 722–723, 726nn11–12;
643 memory and, 723–724; modernity and,
suffering: adoptees and, 116, 125, 127; al-Qireyne 626, 722, 724, 725, 726n10; organ
in refugee community and, 144; biotech- transplant programs and, 334, 418–426,
nologies of reproduction and, 74, 77; 420–421, 428, 429n2, 429n4; the other/
cancer and, 187, 199–200; colonialism Other and, 724; psychic and, 714;
and, 431–433, 435; cosmetic surgery after reincarnation and, 640–641; self and, 714,
breast cancer and, 333, 383; dying and, 698, 724; sexual assault victims and, 297;
705, 707–708; healers/healing and, 332, spaces/places and, 715–716, 724, 725n5,
368; HIV/AIDS and, 227; humanitarian- 726n13; SRM and, 806; subjectivity/ies
ism and, 2; Katrina-related deaths and, and, 716–717, 720, 724, 726n12; suicidality
568; lonely deaths of elders and, 664; loss and, 117, 561–562, 567–568, 571nn7–8;
and, 476–479, 482, 485–486, 488; male suicide bombers and, 616n12, 632;
infertility and, 74; normative death and, suicide-prevention campaigns/biomedical
653–654, 658; police violence and, 494, interventions and, 625, 628, 713–714;
507; psychosocial treatment programs and, temporality/ies and, 625–626, 714–717,
302–306, 309, 313; racial health disparities 719, 721–724, 725nn4–8; tradition/s and,
and, 548–549; right-to-health litigation 625–626, 722–723, 726n10, 726n11;
and, 253; secular body/ies and, 337–340, voiced/unvoiced effects and, 715, 720–721,
344–345, 347–351; self-immolation and, 725n12
448, 604, 612, 614; subdisciplinary Sullivan, Winnifred, 339–340
boundaries and, 2, 31n1; survival and, Sunder Rajan, Kaushik, 14
731–733; valuation of lives and, 777; supplementarity, and biotechnologies, 70–71
Vietnam War and, 733. See also pain/pain survival: overview of, 623–624, 626, 729–730,
management 739; addiction and, 317–318, 325, 327n1;
suicides: overview of, 625–626, 725; agency Buddhist merits or bon and, 732, 734;
and, 719; assisted suicide and, 525–526, collective identification and, 731; communi-
709n4; biopolitics and, 626, 713–714, 724; ties and, 736; continuity and, 730–731, 736;
biopower and, 625, 713, 718; bureaucracy death and, 500, 626, 731–734, 740n2,
and, 713, 716, 725; care/caregiving and, 740n6; death and rebirth cycle or saṁsāra
716–717, 722, 725nn7–8; clock time and, and, 732; dharma and, 738, 741n20;
716–717, 716–719, 724–725, 725nn4–6; disabilities and, 532, 534; dream and, 734,
colonialism and, 713–714, 716–719, 721, 738; economic/financial insecurity and,
724, 725nn4–5, 726n11; combat-injured 729–730, 740n1; ethics of survival and,
soldiers’ rehabilitation and, 406; commu- 698, 706–707, 732–733, 739; futurity and,
nities and, 713, 718, 723; continuity and, 730, 732; ghosts and, 730, 732, 737;
714; death and, 712–715, 719–721, 724, 725; guardian spirit or neak ta and, 737–739,
desires and, 724; dreams and, 625–626, 740n16; historical narratives and, 730,
712–713, 712–717, 713, 719–721, 725; 732–738, 740nn8–9, 740nn15–17, 741n18;
embodiment and, 724; evidence-based Holocaust and, 736; justice/injustices and,
science and temporality/ies and, 725n7; 735; karma or kamm and, 626, 733–735,
futurity and, 714–715, 721, 723, 726n14; 740n4; of Katrina hurricane, 559, 568,
INDEX • 871
survival (continued) reproductive health and, 55–56; semiotic
569, 570n2; language and, 734–735, square of breast cancer and, 383, 386–387,
740nn7–9; life and, 500, 626, 730, 734, 395–396, 396; sexual/reproductive violence
736–738; lonely deaths of elders and, 663; and, 133; survival and, 735, 738; valuation
loss and, 730; materiality and, 732, 735; of lives and, 772; violence and adoptees
memory and, 730, 732, 735–736; memory and, 119
and ethics of survival and, 502, 706; (mis) sympathy, and secular body, 338, 345, 348
fortune or kruh and, 735, 740n10;
modernity and, 738, 739; nationalism and, Tabutin, Dominique, 786, 789, 804, 807
731, 735; police violence and, 500–502; Tagore, Rabindranath, 617n19
poverty and, 729–730; psychic and, 733; “take-home” babies, and reproduction
recovery and, 736; religions and, 730, 732, biotechnologies, 73, 77
734, 738, 740n4, 740n16, 741n20; “talisman” (hijab), and al-Qireyne in refugee
resilience system and, 730; risk and community, 147–152
economic survival and, 14, 164–165, “talking to,” and kinship, 292–294
296–298; rituals and, 626, 732–733, 735, Talmage, David W., 355
738–739, 740nn10–11, 741n18; self and, Targoff, Ramie, 343–344
741n18; shame and, 735; silence and, 735; Taylor, Charles, 9, 338, 349
social issues and, 732, 734, 739; space/ Tay-Sachs disease, 531–532
place and, 730, 736–739, 740n12, Technical Adoption Council, 108–110
740nn15–16, 740nn15–17; spiritual/sacred temporality/ies: addiction and, 317–319, 321;
energy and, 730, 738–739; starvation and, cancer outpatient facility and, 677–678,
729–730; statistics and, 731, 740n2; 686–687; clock time and, 716–719,
suffering and, 731–733; symbolism and, 724–725, 725nn4–6; colonialism and,
735, 738; temporality/ies and, 730–732; 334–335, 431–433, 436–438; death and
Theravadin Buddhism and, 626, 732, 734, medicine/medical technologies and, 657;
741n20; viktim and, 302–310, 313; dreams and suicides and, 714–717; dying
wandering spirits/souls or pret and, and, 698, 705, 706; evidence-based science
733–734 and, 725n7; healers/healing and, 368–370,
Sutton, Willie, 685 372–378; hunger and, 576, 583, 594;
Swanson, Jeffrey, 206 Katrina-related deaths and, 447, 560,
Swazey, Judith P., 424 565–567, 569; lonely deaths of elders and,
Swift, Jeremy, 580 664; loss and, 476, 480; medicine/medical
Sylvain, Vincent, 565, 568 technologies and right-to-health litigation
symbolism: adoptees and, 126; al-Qireyne in and, 260, 266; mental health/illness and,
refugee community and, 149, 153–156, 513–518, 520, 522–523; normative death
157n4; biotechnologies of reproduction and, 656–659, 660n4; psychosocial
and, 71; colonialism and, 432; combat- treatment programs and, 302, 304–308,
injured soldiers’ rehabilitation and, 400, 310, 312; scientific knowledge and, 725n7;
406, 412; cosmetic surgery after breast suicides and, 625–626, 719, 721–724,
and, 383, 385–386, 389, 395–396, 396; 725nn4–8, 726n11, 726n14, 727n15;
death and, 638, 640, 671, 709n12; survival and, 730–732
disabilities and, 10; life/concept tension Teresa, Mother, 136
and, 450, 453–454, 459; mental health/ Terra, Eugenio, 263
illness and, 511–512, 518; organ transplant thanatocracy, and youth/death relation, 758, 763
programs and, 334, 419, 422–424, 428, The, Anne-Mei, 697
429n6; pain and, 187; racial health therapy/therapeutic/s: al-Qireyne in refugee
disparities and, 544; reproduction and, 41; community and, 143; during colonialism,
872 • INDEX
335, 431–438; consumer versus patient- trauma: al-Qireyne in refugee community and,
citizens and, 252–253, 256–258, 261–262; 143–144, 155; birth mothers of adoptees
healers/healing and, 332, 369–370; and, 115–116, 120; colonialism and, 432,
health-care rights and, 256, 263; mental 435–436; PTSD and, 165, 302–304, 307,
health/illness and, 513, 517, 519; obligations 310, 312, 413n8, 500, 733; TBI and
and, 271–273, 275–280, 283–284, 285n14, combat-injured soldiers’ rehabilitation and,
286n18; psychosocial treatment programs 401, 405, 413n8. See also violence
and, 301–302, 304–306, 313; security and, Trauma Resiliency Model (TRM), 313, 314n5
14, 68–71, 79; self-immolation and, 610; traumatic brain injury (TBI), 401, 405, 413n8
therapy groups and, 304–310, 314n2 triage, and waiting in clinics, 162, 168, 179–180,
thick description, 5, 32n6, 637 182nn16–18
Thomas, Christine, 305–306, 308 Tsing, Anna, 610
thresholds of life, 23, 30–31, 594 tuberculosis (TB). See DOTS TB program
Throop, Jason, 613 Turnbull, Colin, 579, 583–584
Timmermans, Stefan, 67 Turner, Victor W., 334, 419, 423, 745, 765n15
torture, 132, 134, 303, 305, 346–347, 349
touch (haptic), 199, 325–326, 390, 400, 406, Uexküll, Jakob von, 19
408–412, 625, 698, 700, 704–705, 708, uncanny, the, 717
709n8, 710n19 unconscious, the, 156, 157n4, 385, 423. See also
tradition/s: al-Qireyne in refugee community consciousness, and normative death
and, 145; biomedical health care versus United Nations, 130, 226–227, 301, 311, 775–776
healers/healing and, 189; bureaucratic unvoiced/voiced effects, 30, 202n17, 475, 477,
legitimacy and documents and, 101; 480, 489, 599, 614n2, 715, 720–721,
colonialism and, 436–438; healers/healing 725n12
and, 367–368, 370–372, 375–377, 379n3, urban centers, 207, 212, 222–223, 228, 229n9,
379n9; hijras and, 86; home birth practices 735, 739, 779–780. See also rural areas;
and, 50–52, 54, 58–62; life/concept tension youth/death relation
and, 457–460; mental health/illness and,
511; organ transplant programs and, 418, Valéry, Paul, 522
421–422; psychosocial treatment programs valuation of lives (worth of lives): overview of,
and, 304–305, 308–309; secular body/ies 627, 770–772, 781; abolitionism and, 775;
and, 342; self-immolation and, 599, 609; affects and, 627, 770, 777, 781; aspirations
suicides and, 625–626, 722–723, 726n10, and, 627, 775; biocitizenship and, 772;
726n11; TCM and, 642; traditional birth biolegitimacy and, 7; biological and, 772;
attendants and, 42, 48, 52–55, 58–59, biopolitics and, 44, 772; care/caregiving
62–63, 65n3; traditional birth attendants or and, 778–779; Christianity and, 627,
dais and, 42, 48, 52–55, 58–59, 62–63, 773–774; class/es and, 627, 776–778, 781;
65n3; “traditional” gathering/trading of for- commodification and, 771–773, 776–777;
est produce and, 582–584, 586–587, 593, death and, 560, 634, 644n12, 770–771,
595n5, 595n9; youth/death relation and, 773–778; Enlightenment and, 774; equality
626, 744–748, 761–762, 764nn1–10, and, 627, 700–702, 772–775, 774–775, 777;
764n7, 765nn12–15, 765n13, 767n27 ethics and, 627, 770–771, 773, 777–778,
transformations, 648, 652, 655 781; family making and children and, 41;
transnational adoptions, 114–115, 117–119, gender and, 627, 772, 781; humanitarian-
123–125, 127n1, 132, 134–137 ism and, 627, 775–777, 781; humanity
transplant programs, organ. See organ and, 770, 772–774, 781; human rights and,
transplant programs 627, 774; inequality and, 627, 770–778,
transracial adoptees/adoption, 122 780–781; institutional practices and moder
INDEX • 873
valuation of lives (worth of lives) (continued) and, 601–602, 607–610, 609–610, 612,
nity and, 4; justice/injustices and, 773, 780; 615n9, 617n22, 617n25; sexual assault
life expectancy and, 779–781; lonely deaths victims and, 164, 289, 291, 296; soft
of elders and, 664, 668; longevity and, violence and, 151–152; structural violence
772; materiality and, 772, 778; military and, 14, 107, 161, 175; suicide bombers and,
conflicts/operations and, 775–776; 616n12; symbolism and, 119; torture and,
modernity and, 773–774, 781; mortality 132, 134, 303, 305, 346–347, 349; witnesses
rates and, 779–781; (neo)liberalism and, of, 501, 612; youth/death relation and, 743,
773; non-Christians and, 627, 773–774; 754–757, 762, 766n23. See also police
North-South divide and, 776; precarity and, violence; trauma
780; qualitative terms and, 771, 780; virtue/virtuous death, and self-immolation, 448,
quantitative terms and, 771, 780; race and, 602–604, 610, 613, 616n12, 616n15
627, 773–775, 773–776, 779–780; visible/invisible: adoptions and, 107; cancer
sacredness and, 627, 772–773, 777, 781; and, 190; cancer outpatient facility and,
sacrifice and, 773–774; self and, 773; social 694–695; colonialism and, 435, 437; death
issues and, 15, 772, 780–781; statistics and, and, 636, 638, 643; disabilities and,
627, 777–781; suffering and, 777; 525–526, 535; hijras and, 92; Katrina-
symbolism and, 772 related deaths and, 569–570; lonely deaths
Valverde, Mariana, 102–103, 105 of elders and, 669; mental health/illness
Vaughan, Megan, 595n4 and, 519; psychosocial treatment programs
vernacular zone, and colonialism, 334–335, 433, and, 303; racial health disparities and, 551;
437–438 schizophrenia and, 207–208, 213;
Vernon, James, 577 self-immolation and, 615–616, 618n28;
veterans, and compensation, 399, 413n1 valuation of lives and, 778, 781; waiting in
Victim Assistance Rehabilitation Program (the clinics and, 168; youth/death relation and,
Rehab Program), 304–305, 310 749, 761
victimhood/victimization, 206, 214, 478–479 Visveswaran, Kamala, 602
videotape, and mediation and death, 624, vitality: combat-injured soldiers’ rehabilitation
648–651 and, 406; death and, 633–635, 644n9;
Vigh, Henrik, 489 dying and, 700; form/s of life and, 3–4;
Villermé, Louis-René, 778 medicalization of dying and, 690;
violence: colonialism and, 334–335, 432–435, normativity and, 16–18, 32n10; pathology
438; gender, 30, 116, 120, 122, 130–132; gun and, 16–18, 32n10; vitalism and, 32n10,
violence and, 162, 205–206, 212–213; 566, 631, 644n9; youth/death relation and,
healers/healing and, 368, 375; individual/ 743–744, 763
world relation and, 444, 465–466, 468; Vogler, Candace, 176
intimacies and, 44; life/concept tension voiced/unvoiced effects, 30, 202n17, 475, 477,
and, 443, 451–453; loss and, 477–478, 480; 480, 489, 599, 614n2, 715, 720–721,
medicalization of, 207, 212; mental health/ 725n12
illness, 162, 205–206, 210, 212–214; vulnerabilities: addiction and, 318, 322, 325;
organized violence and, 301, 309; political al-Qireyne in refugee community and, 145;
violence and, 143, 301, 303; politics/ biopolitics and, 8; biosecurity and, 8;
political power and, 346; psychosocial cancer and, 189; colonialism and, 6–7;
treatment programs and, 301, 303; combat-injured soldiers’ rehabilitation and,
sanity/”mad” and, 162, 205–206, 211–212, 408, 411; cosmetic surgery after breast
214; schizophrenia and, 161–162, 205–207, cancer and, 388; everyday life and, 28–29,
209–214; secular body/ies and individual 33n13; HIV/AIDS and, 163, 217, 221; of
violence and, 345–347; self-immolation human action, 33n13; hunger and, 584–585,
874 • INDEX
591; lonely deaths of elders and, 664; Warner, Cameron David, 616n15
psychosocial treatment programs and, 301, wartime rape, 44, 130–132, 137, 139
307; the real/unreal and, 28–29; secular water (shortages), and food, 447, 576–577,
body/ies and, 350; sexual assault victims 586–587, 589–591, 593–594
and, 164, 289, 295, 297–298; sexual/ waxing and waning, 3–4, 23, 30–31, 291–292,
reproductive violence and, 140; and the 331, 447–448, 527, 591–592
state, 7–8 “we,” 28, 443–444, 489, 507. See also collective
identification
waiting, and the clinic: overview of, 161–162, Weber, Max, 101, 110, 724
167–169, 180; belonging and, 161–162, Weiner, Norbert, 356
168, 176–177; bureaucracy and, 161, Westry, Shelia, 395, 395
168–171, 177–178; care/caregiving and, White, Bob, 762
161–162, 164, 168–176, 175–178, 180, whites, 162, 206–210, 212, 547–548, 551–554,
182n13; chemotherapy and, 170–172, 552, 779. See also blacks (African Ameri-
174–175, 180; citizenship and, 161–162, cans)
168, 178–180, 181n3, 182nn15–18; Whorton, Jim, 689
commoditization of time and, 173, 181n9; widows of martyrs, 475–476, 480–484, 487,
compassion and, 181n12; continuity and, 489, 490n1
177–178; dying and, 168; equality and, “wild”/“distress” foods, and hunger, 584, 588,
167–168, 179–180; healers/healing and, 592
176; humanity and, 162, 175–176; William of Malmesby, 773
inequality and, 168, 178–179, 182n15; Williams, Robert, 212–213
intimacies and, 176; marketization and, Willis, John, 717–718
169–170, 181n6; methodology and, 169, Winnicott, Donald W., 182n17
181n4; (neo)liberalism and, 161; NHS and, witchcraft, 747, 752, 754, 756–757, 759–760
167–168; oncology outpatient facility and, witnessing/witnesses, and self-immolation,
677–678, 681–683; patient experiences 448, 612
and, 169–176, 181nn9–11; private versus Wittgenstein, Ludwig: evidence, 4–5, 339, 341;
public health care and, 176–178; queuing form/s of life, 3, 21–26, 29–30, 476, 480;
and, 168, 173, 176, 180, 181n9; reforms given/givenness, 464; grammar, 24, 26,
and, 176, 182n13; self and, 169; staffing 331, 480; individuality, 17, 614; “invented
and staff ’s responsiveness and, 170–171, natural history,” 26, 42; language, 21–29,
174–175, 177–178, 180, 181nn11–12; 334, 476, 480, 486, 489; secular body, 344;
structural violence and, 161, 175; subject/ suffering, 16, 494; telling something and
citizen tension and, 161–162, 168, 178–180, news to others, 644n1
182nn15–18; transitional space and, 179, wives of detainees, and loss, 475–476, 480,
182n17; triage and, 162, 168, 179–180, 484–490
182nn16–18; visible/invisible and, 168 Woeser, 614n4, 615n9, 617n25
Waldron, Ingrid, 789, 805–806 Wolf, Susan, 153
Walker, Rebecca, 507 Wood, David, 405–406
Walter Reed Army Medical Center, 333, 400, World Bank, 571n10, 785–786, 788, 805
413n5, 414n13. See also combat-injured World Health Organization (WHO): cancer
soldiers’ rehabilitation and, 190; DOTS TB program and, 163,
Walzer, Michael, 32n6 233–234, 236, 244; FDCs and, 239;
wandering spirits/souls (pret), and survival, first-line drugs for TB abbreviations and,
733–734 247n1; health care rankings and, 779;
war heroines (birangonas), 132–134, 139–140, health of populations rankings and, 753;
140n3 IMR and, 821n14; Katrina-related deaths
INDEX • 875
World Health Organization (WHO) (continued) and, 763; identity and, 759, 761–763; IMR
classifications and, 562; pain management and, 766n22; infrastructure and, 748–749,
protocols and, 189; SRM and, 628, 784, 762–763; intergenerational conflict and,
786, 788, 807–808, 808, 810, 812, 812, 626, 754–761, 764, 766nn24–25;
814–816, 816–817, 821n14 intersubjectivity/ies and, 460, 757–758;
world wars, 118, 333, 400–401, 413n6, 527, 699, intimacies and, 743, 750, 757, 762; kinship
709n7 and, 744–747, 751–752, 754–757, 764n2,
world/worldliness, 153, 342–345, 444–446, 448, 764n5, 764n7, 764n9, 766n24; life and,
470–471, 471–472, 507, 636, 643 626–627, 743, 749, 750, 753, 763, 767n27;
worth of lives. See valuation of lives local actualization and, 627, 762; loss and,
743, 752, 763; ludic and, 626–627, 752,
XDR TB (extensively drug-resistant tuberculo- 754, 762–763; materiality and, 744,
sis), 246 748–749, 754, 757, 760–761, 763; media
and, 751, 753, 760, 767n26; modernity and,
Yamada Masahiro, 672n3 758, 762; morgues and, 748, 752, 760–761;
Yaojie, Gao, 226–227 mortality rate and, 753; mourning ritual
Yeh, Emily T., 615n7, 616n12 and, 744–748, 751–757, 758, 761–763,
youth/death relation: overview of, 626–627, 764nn1–10, 765nn12–15, 766n21, 766n23;
743–744, 763–764; abandonment and, 758, necropolitics and, 758, 764; (neo)liberalism
763; aesthetics and, 754, 761; affects and and, 759; nocturnal wake ritual and,
funerals and, 757; the body/ies and, 754, 744–746, 748, 752, 764n7; performativity
757, 762–763; cadaverous or cadavéré and, and, 626–627, 755–756, 762, 766n24,
749, 757–758, 765n16; Camp Luka and, 767n27; politics/political power and, 626,
748–750, 753–754, 756, 758, 765n20; 743, 755, 757–758, 761, 764, 766n25;
cemeteries/burials and, 626, 743–744, population statistics and, 753; public space
748–754, 751, 757–758, 760, 760, 765nn16– and, 626, 743–744, 752, 760, 766n21,
20; cemetery city or cité cimetière and, 749, 766n23, 767n26; sacrifice and, 758–759,
763; child mortality and, 753, 765n20, 763; social issues and, 743, 752–753, 755,
766n22; Christianity and, 755, 759–760, 758–759, 761, 766n25; street children or
766n25; colonialism and, 748–749, 751, bashege and, 760; thanatocracy and, 758,
766n23; commodification and, 750, 755, 763; traditional death-related rituals and,
765n20, 766n24; copulation and, 747, 755, 626, 744–748, 761–762, 764nn1–10,
756, 762–763, 765n13; corpse and, 743, 765nn12–15, 767n27; violence and, 743,
746–748, 755–756, 758, 760–763, 765n13; 754–757, 762, 766n23; visible/invisible
corpus vile and, 743, 758; death and, 626, and, 749, 761; vitality and, 743–744, 763;
627, 750, 751–754, 757, 760–761, 763, witchcraft and, 747, 752, 754, 756–757,
767n26, 767n27; “defamiliarization” or 759–760; “youth gangs” or kuluna and,
ostranenie and, 743–744, 763; disorder and, 754, 760, 766n23, 766n25. See also
754–757, 766nn23–24; documentary and, children
758, 765n17; embodiment and, 763;
entropology and, 757; ethics and, 743, 757, Zelizer, Viviana, 772
760–762, 763; funerals and, 744, 748, 750, Zhang Ke, 227
754–757, 756, 760, 766n21, 766n24, Ziegel, Ty, 414n14
767n26; futurity and, 627, 761–762; grave Zigon, Jarrett, 613
diggers and, 750, 757, 765n20; humanity Zook, Darren, 577
876 • INDEX