Documenti di Didattica
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5080
Phil
Original
New
Brown,
approaches
Article
to social
Zavestoski,
movements
Sabrina
in health
McCormick
et al.
Blackwell
Oxford,
Sociology
SHIL
01419889
January
0
1
26
00
Blackwell
UK
2004
Publishing
ofStephen
Publishing
Health
&Ltd
Illness
Ltd/Editorial
Board
2004
Brown University
University of San Francisco
Abstract
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Introduction
Social movements dealing with health are very important influences on
our health care system, and a major force for change in the larger society.
The first instances of social movements organising around health issues
date at least back to concerns with occupational health during the Industrial Revolution. More recently, womens health activists have greatly altered
medical conceptions of women, broadened reproductive rights, expanded
funding and services in many areas, altered many treatment forms (e.g.
breast cancer), and changed medical research practices (Ruzek 1978,
Ruzek, Olesen and Clarke 1997, Morgen 2002). Similarly, AIDS activists
have achieved expanded funding, greater medical recognition of alternative
treatment approaches and major shifts in how clinical trials are conducted
(Epstein 1996). Mental patients rights activists have brought major shifts
in mental health care, including the provision of many civil rights that
used to be inferior to those of prisoners, and have achieved both the right
to better treatment and the right to refuse certain treatments (Brown 1984).
Citizens dealing with issues of general health access have fought against
hospital closures, struggled against curtailment of medical services and
against restrictions by insurers and managed care organisations (Waitzkin
2001). Self-care and alternative care activists have broadened health professionals awareness of the capacity of laypeople actively to deal with their
health problems (Goldstein 1999). Disability rights activists have garnered
major advances in public policy on disability rights such as accessibility and
job discrimination, while also countering stigma against people with disabilities (Shapiro 1993). Toxic waste activists have drawn national attention to
the health hazards of chemical, radiation and other hazards, helping shape
the development of the Superfund Program, obtain regulations and bans on
toxics, and remediate many hazardous sites (Brown and Mikkelsen 1990,
Szasz 1994). Environmental justice activists, who are centrally concerned
with environmental health, have publicised the links between physical health
and social health, in the process proving health improvement and disease
prevention require attention to, and reform of, a variety of social sectors,
such as housing, transportation and economic development. This has led to
a presidential Executive Order requiring all federal agencies to deal with
environmental inequities, has prevented further creation of such inequities,
and has generated numerous academic-community partnerships to study,
treat, and prevent asthma (Bullard 1994, Shepard et al. 2002). Occupational
health and safety movements have brought medical and governmental attention to a wide range of ergonomic, radiation, chemical and stress hazards
in many workplaces, leading to extensive regulation and the creation of
the Occupational Safety and Health Administration and National Institute of Occupational Safety and Health (Rosner and Markowitz 1987).
Physicians have organised doctor-led organisations to press for healthcare
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for the underserved, to seek a national health plan, and to oppose the
nuclear arms race (McCally unpublished).
The above examples demonstrate not only how activism around health
issues has been very important in social change, but also show the extent of
social science research on these movements. But researchers studying HSMs
typically have not adopted social movement perspectives; in fact, much of
the research on HSMs has not been conducted by sociologists. Further,
social movement scholars have paid little attention to health-related movements. Hence, we offer a theoretical conceptualisation of what we term
health social movements, and focus on one subset of these movements,
Embodied Health Movements, to demonstrate how our theoretical approach
can be applied.
Drawing on Della Porta and Dianis (1999) definition of social movements
as informal networks based on shared beliefs and solidarity which mobilize
around conflictual issues and deploy frequent and varying forms of protest,
we define HSMs as collective challenges to medical policy and politics, belief
systems, research and practice that include an array of formal and informal
organisations, supporters, networks of co-operation, and media. HSMs
challenges are to political power, professional authority and personal and
collective identity. HSMs, as a class of social movements, are centrally
organised around health, and address issues including the following general
categories: (a) access to, or provision of, health care services; (b) health
inequality and inequity based on race, ethnicity, gender, class and/or sexuality; and/or (c) disease, illness experience, disability and contested illness.
Based on these categories, we developed a preliminary typology of HSMs.
This model represents ideal types of HSM; however, the goals and activities
of some HSMs may fit into more than one of these categories. The model is
aimed at beginning the process of analytically exploring a wide range of
movements that deal with health rather than providing a definitive heuristic.
Although there may be some outlying social movements that involve actors
who deal with medical or health issues, we believe that this heuristic encompasses the broad majority of HSMs. We first define each sub-category of
HSM, and then explain potential areas of overlap. Health Access Movements seek equitable access to healthcare and improved provision of healthcare services. These include movements such as those seeking national
healthcare reform, increased ability to pick specialists, and extension of
health insurance to uninsured people. Embodied health movements (EHMs)
address disease, disability or illness experience by challenging science on
etiology, diagnosis, treatment and prevention. EHMs include contested
illnesses that are either unexplained by current medical knowledge or have
purported environmental explanations that are often disputed. As a result,
these groups organise to achieve medical recognition, treatment and/or
research1. Additionally, some established EHMs may include constituents
who are not ill, but who perceive themselves as vulnerable to the disease;
many environmental breast cancer activists fit this characterisation, in
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joining other women who do have the disease. Among these movements are
the breast cancer movement, the AIDS movement and the tobacco control
movement. Constituency-based health movements address health inequality
and health inequity based on race, ethnicity, gender, class and/or sexuality
differences. These groups address disproportionate outcomes and oversight
by the scientific community and/or weak science. They include the womens
health movement, gay and lesbian health movement and environmental
justice movement.
The categories of our typology are ideal types. The range of organisational agendas within any movement will not always fit neatly into each
category, and there is often overlap with other categories. For example, the
womens health movement can be seen as a constituency-based movement,
but at the same time it contains elements of both access HSMs (e.g. in
seeking more services for women) and embodied HSMs (e.g. in challenging
assumptions about psychiatric diagnoses for premenstrual symptoms). Nevertheless, by virtue of having a large categorical constituency, the womens
health movement directly raises issues of sex differences and gender discrimination, and also represents a large population with specific interests; thus
the constituency nature is significant. For another example, environmental
justice organisations typically centre their actions on their own illnesses or
their fear of becoming ill. At the same time, they address the disproportionate burden of polluting facilities and health effects in communities of colour.
As a result, these environmental justice organisations share features of both
embodied health and constituency-based health movements.
There are also important differences within social movements concerned
with health. Within any given movement, organisations vary by their goals
and strategies. We feel this diversity is best summarised by a strategy and
agenda continuum. At one end of the continuum are advocacy-oriented
social movement organisations. By advocacy, we mean groups that work
within the existing system and biomedical model, use tactics other than
direct, disruptive action (e.g. education), and tend not to push for lay knowledge to be inserted into expert knowledge systems. At the other end of the
continuum, activist-oriented groups engage in direct action, challenge current scientific and medical paradigms, and pursue democratic participation in scientific or policy knowledge production by working largely outside
the system.
Further, there can be embodied movements where adherents have a strong
critique of the dominant science, but rather than working to produce
alternate science (with or without professional allies), they reject scientific
explanations. Some radical elements of the psychiatric survivors movement
have this characteristic; they resist traditional psychiatry, eschew reform
approaches and oppose the very idea that they have (or have had) mental
illness. What is key about the embodied nature of this movement, however,
is that activists frame their organising efforts and critique of the system
through a personal awareness and understanding of their experience.
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stronger air particulate regulation. Others do not challenge the state at all,
and instead focus on such non-state targets as scientific organisations and
medical institutions, challenging for example, the pharmaceutical firm
AstraZeneca on promotion and direct advertising of preventive use of
Tamoxifen.
The frame alignment perspective offers a way to understand the interpretive, attributional and social constructive processes of social movements.
Social movement actors identify problems, define solutions, motivate action
and set action agendas in ways that resonate with the personal experiences,
values and expectations of potential constituents (Benford and Snow 2000,
Snow et al. 1986). In this way, EHMs align the illness experience of potential
constituents with the illness experience defined by the movement. Within an
affected population however, framing is vital in transforming the illness
experience from a personal trouble to a social problem, but such frame
alignment strategies are initially viable only among those who are illness
sufferers and their allies.
Once SMOs have been formed, they are often successful at recruiting
followers and supporters who do not have the particular condition that
defines the organisation. This is evident in the breast cancer movement,
which comprises not only survivors, friends, relatives and/or care-givers, but
also people who participate in activities such as the Avon Breast Cancer
Walk/Run or pink ribbon campaigns. Though most scholars employ frame
alignment to address movement participants restructuring of grievances
and values, the perspective can be extended to address the cognitive and
social-structural framing of scientific knowledge (Krogman 1996, Shibley
and Prosterman 1998, Shriver et al. 1998). Despite its utility, however, some
scholars suggest that the framing literature has been far too cognitive, initially side-stepping the role of emotions in rendering frames salient in the
first place (Benford 1997, Benford and Snow 2000, Goodwin et al. 2001).
New social movement (NSM) theory focuses on a category of social
movements that includes the peace, environmental and feminist movements.
NSM theorists have attempted to understand social movements that are not
well explained by traditional models. We share a similar goal, and agree that
there may be useful concepts or interpretive tools. For example, NSM theory
brings culture to the fore and offers a robust discussion of contested knowledge; we find this aspect of NSM theory useful. NSM theory, however, offers
an incomplete framework for the analysis of EHMs because it argues that
social class is less significant in post-industrial societies (Fitzgerald and
Rodgers 2000). In fact, class remains a salient feature of many, though not all,
movements around health, and any approach that seeks to understand these
movements must consider class and social structure. Our research on asthma
activism, for example, shows that poor, inner-city communities of Blacks
and Latinos play a dominant role in organising around asthma, and they
integrate their organising with efforts to address a host of class-based issues
in housing, transportation and economic development (Brown et al. 2003).
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critique also places responsibility for treating and preventing the disease (e.g.
the potential impact of toxic substances, the failure of government to reduce
toxic exposures) on social institutions instead of individuals. In short, a politicised collective illness identity begins the process of transforming a personal
trouble into a social problem. At this stage, people with the disease no longer
focus primarily on treatment access, support groups and expanded research,
but on seeking structural explanations and the requisite structural changes. In
this latter development, people without the disease can be part of the collective identity, either because they are friends or relatives of someone with the
disease, or because they have reason to fear they will get the disease in the
future. This latter stage clearly offers the potential of a larger critical mass.
Part of what causes individuals with illness to begin experiencing a politicised collective illness identity is their common experience within government, medical and scientific institutions that create what we have described
elsewhere as a dominant epidemiological paradigm (Brown et al. 2001). The
dominant epidemiological paradigm is the codification of beliefs about
disease and its causation by science, government and the private sector. It
includes established institutions entrusted with the diagnosis, treatment
and care of disease sufferers, as well as journals, media, universities, medical
philanthropies and government officials. There are many structures and
institutions that contribute to a generally accepted view of disease, but
people do not immediately see them. Furthermore, the dominant epidemiological paradigm is both a model and a process. It is a model in that it
helps us understand the complexity of disease discovery. It is a process in
that it delineates a variety of locations of action. Actors can enter the
dominant epidemiological paradigm process at different locations, and take
action on one or more of the components.
The pre-existing institutional beliefs and practices that shape the discovery and understanding of a disease also shape the illness experience for
the affected population. As individuals experiencing illness enter into formal
healthcare systems, these institutions shape their perceptions of the disease.
For example, in the case of Multiple Chemical Sensitivity (MCS), few
mainstream medical professionals will offer a MCS diagnosis. As a result,
individuals who believe they have MCS become frustrated with the medical
system, find themselves in court challenging insurance companies who deny
them coverage, and develop personal strategies for minimising reactions
and managing symptoms (Kroll-Smith and Floyd 1997). Through a shared
illness experience incommensurate with the dominant epidemiological paradigms account of the disease, some individuals with MCS have politicised
their collective illness identity to mobilise communication and support
networks to assist one another in getting well and in challenging medical
professionals who will not, or cannot, provide care5. When disease groups
experience their conditions in ways that contradict scientific and medical
explanations, and these contradictions are identified as a source of inequality,
a politicised collective illness identity may emerge.
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non-science, and good science from bad science, EHMs blur the boundary
between experts and lay people. Some EHM activists informally become
experts by using the Internet and other resources to arm themselves with
medical and scientific knowledge that can be employed in conflicts with their
medical care providers. Others gain a more legitimate form of expertise by
working with scientists and medical experts to gain a better level of understanding of the science underlying their disease. Through this process,
boundary movements gain power and authority by obscuring the boundary
between expert and lay person. In some cases, rather than just blur the
boundary, activists redefine or even eliminate it, as with the National Breast
Cancer Coalitions Project LEAD that helps activists become versed in the
policy and scientific literature so that they can serve on peer review panels
(Dickersin et al. 2001). Some EHM organisations have evolved beyond lay
organisations, since they deal so much with science and contend with the
world of science. They become a hybrid through this process of breaking
down long-existing boundaries.
EHMs are boundary movements in a third sense: they transcend the usual
limits (i.e. boundaries) of social movement activity. They do this by moving
fluidly between lay and expert identities (Epstein 1996), as described above,
through what Ray (1999) calls fields of movements. This conceptualisation also allows us to abandon traditional dichotomies between movement
insiders and outsiders, and between lay and expert forms of knowledge. In
a related fashion, Klawiters (1999) notion of cultures of action encourages
us to look beyond strict conceptualisations of activists in order to include
all actors in the movement field. As a result, the actions of state officials,
scientists and others who may not typically be thought of as within a movement, can be understood in light of the culture of action in which the movement takes place. Activists fluidity allows them to move in and out of social
movement organisations, as noted above in our discussion of spillover.
But more than just spill over across social movements, EHMs cross
boundaries with non-social movement institutions. Wolfson (2001) showed
this in his analysis of interpenetration, whereby tobacco control activists
allied in varying combinations with health voluntary organisations and
government units. Hence, rather than distinct entities, EHMs are savvy
social actors moving between social worlds. Additionally, this approach
redefines who activists are. Through their fluid movement between lay and
expert worlds of knowledge, individuals within the scientific institutions
that are being challenged often play activist roles themselves as what
Krimsky (2000: 151) terms advocacy scientists. Similarly, activists often take
up the challenge of science and policy worlds, moving to become trained in
those areas and hence to act in other arenas. The examples we give here
are not limited to EHMs, since other recent movements act in similar
fashion, especially environmental movements. But they are very prominent
features of many, if not all, EHMs, thus making them important features
for our analysis.
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organisations involved. This provided a comprehensive picture of the experiences within each location, as well as the national picture. Ethnographic
observations (11) were conducted to supplement the interviews, primarily at
Silent Spring Institute in Newton, MA, the nations only centre for research
into environmental causes of breast cancer. These included public meetings
where the researchers presented their work and their larger perspective, scientific review panel meetings and science/activist conferences. Unreferenced
extracts and data come from these interviews and observations.
The broader breast cancer movement has addressed issues of care for
breast cancer patients, knowledge about treatment options, especially in
regard to mastectomies, lumpectomies and radiation, support for those
affected by the disease and increased research funding. National Breast
Cancer Awareness Month, including fundraising walks and runs, involve
tens of thousands of people every year. The movements other successes
include the production of a breast cancer stamp, whose additional cost
above normal postage is given to governmental research institutions to
sponsor breast cancer research, and the Shop for the Cure campaign, where
merchants and credit card companies give a portion of the proceeds to
breast cancer foundations. The general breast cancer movements success
can also be seen in the amount of breast cancer research dollars, which have
increased from $90 million in 1990 to $600 million in 1999, and in the ability
to win federal legislation, such as the Breast and Cervical Cancer Treatment
Act of 2000 (Brenner 2000, Reiss and Martin 2000).
Since the early 1990s, the environmental breast cancer movement has
reframed the successes of the broader breast cancer movement. Activists
believe that for years people took for granted the mammography is the best
form of prevention position of the American Cancer Society, National
Cancer Institute and other parts of what activists term the cancer establishment. Environmental breast cancer activists argue that once a tumour is
detected prevention has failed since the tumour now exists. This stance is
assisted by the growing scientific awareness that mammography is not very
effective in women under 50. Activists also challenge the corporate control
of Breast Cancer Awareness Month. They have additionally mounted a campaign to have breast cancer stamp revenues shifted to the National Institute
of Environmental Health Sciences from the National Cancer Institute, where
research on environmental factors is not supported (Brenner 2000).
These activists were motivated by the lack of evidence for breast cancer
causes and by the potential link to environmental contaminants. Their
concern with environmental factors developed when women noticed higher
than average rates of breast cancer cases in several geographic areas around
the country Long Island, New York, the San Francisco Bay Area, and
Massachusetts. The EBCM grew out of these three locations into a successful, national-level movement. It has worked towards four main goals: (1) to
broaden public awareness of potential environmental causes of breast cancer;
(2) to increase research into environmental causes of breast cancer; (3) to
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widely used in research. Whose breasts did [the cells] come from and what
was her fate?, asks Steingraber (1998: 121). Identifying this woman is in
sharp contrast to pharmaceutical firm Myriads literal ownership of a
patent on BRCA-1 for research purposes.
The environmental breast cancer movement relies on the body in constructing a politicised collective illness identity in two additional ways. First,
it criticises medical objectification of the female body, and its treatment of
womens breasts as objects of research independent of the womens bodies
and their locations in toxic environments. This is evident in an activists
remark that the link between the environment and breast cancer is sentinel
in terms of womens health and that it reminds people that reproduction
occurs in the context of a wider world. The criticism is also captured in the
following statement made by a scientist who argued that researchers need to
start to think about the biological processes happening in the breast in
relationship to the world in which the woman is walking who happens to
have those breasts so that theres not just this disembodied breast thats
hanging out somewhere.
Second, the environmental breast cancer movement frames the bodily
experience of breast cancer as linked to a social structure that exposes
womens bodies to unequal environmental burdens. It does this, for example,
by criticising the mainstream movements focus on treatment. Though environmental breast cancer activists acknowledge the importance of treatment
research, they contend that prevention ought to be the main priority. Silent
Spring Institute (SSI), for example, focuses solely on prevention. They
believe that this focus on prevention can push other breast cancer researchers
to begin asking questions about whether there is something about womens
lives in modern consumer societies that increases susceptibility to breast
cancer. For instance, environmental breast cancer activists question the use
of oestrogen, a suspected cause of breast cancer, in hormone replacement
therapy. At SSI, researchers are attempting to document and investigate the
chemicals women are exposed to on a daily basis; this includes characterising a number of chemicals that have never before been studied as hormonally active agents. Through these and other strategies, environmental breast
cancer activists transform the individual illness experience into a politicised
collective illness identity.
Social movement spillover and boundary movements
The environmental breast cancer movement also reflects how important
social movement spillover is to EHMs. Spillover of knowledge and network
resources from the womens health movement, AIDS activism and the
toxic waste and environmental movements was vital to the development of
a politicised collective illness identity of women with breast cancer. Many
early breast cancer activists drew from their experience in the womens
movement to ask whether their disease was another instance of gender
inequality. Likewise, many women who participated in the AIDS movement
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from the consumers to the producers, and argues that chemicals should be
proven safe before distribution and use (Raffensperger and Tickner 1999,
Tickner 2003). The EBCM approach also emphasises the role of political
action in publicising the socially constructed nature of illness and its
causation, instead of the traditional focus on the biomedical model. EBCM
activists attempt to move beyond the traditional biomedical assumptions,
which in the case of breast cancer means shifting the focus of research from
lifestyle and genetic factors to environmental aetiologies and the effects of
unregulated industrial processes (Brenner 2000, Myhre 2001).
A varied repertoire
The above sections illustrate two major features of the EBCMs varied
repertoire challenges to science and politicised collective illness experience.
In addition, that repertoire is filled out by how the movement frames breast
cancer in terms of corporate power and ideology. EBCM activists argue that
The impression today is that breast cancer is a growth industry, with Race
for the Cure runs and walks in most major US cities, the constant entry of
new drugs and clinical trials to combat the disease, whole bookshelves
devoted to the topic at local bookstores, and a cornucopia of tee-shirts, hats,
pins, and pink ribbons (Ferguson and Kasper 2000). They believe that many
corporations are getting good public relations out of donations to breast
cancer efforts and have even named breast cancer a dream cause because
it is the feminist issue without the politics. Activists point out that Imperial
Chemical Industries, the parent company of Zeneca (later merged with
Astra to become AstraZeneca), invented Breast Cancer Awareness Month
and retains authority to approve or disapprove all printed materials used by
participating groups. Tying the political economy critique together with
their belief in environmental causation, activists point out that AstraZeneca
at the same time produces pesticides and herbicides that may be causing
breast cancer (Zones 2000).
Our case study of the environmental breast cancer movement provides a
capsule view into a movement that cannot be fully explained by traditional
social movement theory, but that begs for a new synthesis of concepts. The
movements multilevel successes include increased public awareness, growth
in research funds, shifts in types of research, challenges to corporate power
and government policy, and the development of citizen-science alliances.
This social movement developed as a boundary movement that crossed the
lines of a number of other social movements. This case study suggests that
other embodied health movements will have a similar boundary-crossing
nature. Sociologists will need to be more flexible in defining a social movement and examining its development by looking at many facets: political
challenges to governmental authority, scientific challenges to medicine and
science, organisational challenges to health charities, contention for power
and authority among various organisations within a movement, cultural
manifestations and activities to increase public awareness.
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EHMs blur boundaries between lay and expert knowledge offers a new way
of looking at health-related social movements.
Address for correspondence: Phil Brown, Department of Sociology, Brown
University, Box 1912, Providence RI 02912 USA
e-mail: phil_brown@brown.edu
Acknowledgements
This research is supported by grants to the first author from the Robert Wood
Johnson Foundations Investigator Awards in Health Policy Research Program
(Grant #036273) and the National Science Foundation Program in Social Dimensions of Engineering, Science, and Technology (Grant # SES-9975518). We thank
Meadow Linder, Theo Luebke, Joshua Mandelbaum and Pamela Webster for their
part in the larger project from which this article arises. We thank Adele Clark and
Steve Epstein for numerous discussions on these issues, and for their efforts to bring
health social movement scholars together at the 2001 conference of the Society for
the Social Study of Science. We are grateful to Peter Conrad, Steve Epstein, David
Hess, Maren Klawiter, Jim Mahoney and Kelly Moore for their careful reading of
the manuscript. We also thank participants at the Health Social Movements workshop at the August 2002 conference of the Collective Behavior and Social Movements section of the American Sociological Association for helpful comments.
Notes
1 Not all EHMs necessarily centre on grievances; some may primarily want support
or more medical care. These EHMs are perhaps more widespread in the US than
elsewhere, and our focus is primarily on those US movements.
2 Scholars working on the sociology of the body frequently discuss embodiment
as a key term. We do not address the many valuable contributions of this literature here, since we are only beginning the task of describing health social movements and their more focused form, embodied health movements. We hope to
take up such concerns in the near future.
3 Here we are focusing on the institutions of science and medical practice that are
shaped by the biomedical model of disease. Clearly the majority of ill health is
managed without having to engage with these institutions. But because individuals who are able to address health concerns through family support, social
networks or personal symptom management strategies are unlikely to mobilise
around unmet health expectations, we focus on the individuals experience within
formal healthcare systems where unmet health expectations can result in the sense
of injustice that is more likely to lead to collective action.
4 This claim should be qualified since, as previously acknowledged, some illness
sufferers do choose to leave the system of Western medical care by seeking alternative and complementary therapies. As this group of individuals represents a
small minority of the ill who are seeking to restore their health, we choose to
focus on the dependence on science that characterises those who turn to mainstream medical care providers.
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5 Though we lack the space to discuss this here, EHMs tend to rely on the Internet
as a mobilisation tool. The Internet has given patients unprecedented access to
medical knowledge, and the ability to share that knowledge with one another
through discussion lists and bulletin boards. As a result, individual illness experience can often be transformed into collective illness experience, and in turn collective identity.
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