Sociology ofHealth & Illness Vol. 18, No. 1, 1996, ISSN 0141-9889, pp.

107-125

Irving Kenneth Zola, (1935-1994); An appreciation Gareth Williams

Public Health Research and Resource Centre and Institute for Social Research, University of Salford

The theme of this essay is that medicine is becoming a major institution of social control, nudging aside, if not incorporating, the more traditional institutions of religion and law. It is becoming the new repository of truth, the place where absolute and final judgements are made by supposedly morally neutral and objective experts. And these judgements are made, not in the name of virtue or legitimacy, but in the name of health (Zola 1972:4871).

Introduction

When Irving Kenneth Zola, Mortimer Gryzmish Professor of Human Relations at Brandeis University in Massachusetts, died of a heart attack at his home on December 1 1994, the sociology of health and illness lost one of its most accomplished practitioners and the disability rights movement lost one of its most insistent voices. Zola was born into a working class, Jewish household in Boston. His mother was Polish and his father Russian, and both were immigrants to America when they were very young children. The details of his early years have been recorded by Zola himself engagingly and with considerable affection (Zola 1983). His childhood experience of polio and the consequences of a serious road traffic accident when he was nineteen years of age meant that Zola came to understand very early in his life the enormous significance of other people as sources of emotional, social and intellectual support. Some of these relationships were particularly transformative for the young Zola. Recalling his time in hospital with polio he wrote: My physiotherapist, Ms Elizabeth Ernst, helped me question authority and opened my eyes in quite a different way. In retrospect, 1 think she was encouraging me to look beyond myself, to see the ways in which I was part of a larger world. One day she gave me two books to read.
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108 Gareth Williams One was a textbook in psychology (the name of which I can no longer recall) and the other was Gunnar Myrdal's American Dilemma (Zola 1983:12). As well as helping Zola to understand the ways in which people can support each other, this relationship awakened in Zola an interest in what he came to understand were the 'social sciences'; an interest which he managed to sustain through the rigidity of his education at the Boston Latin School, and was later able to explore in the Department of Social Relations at Harvard University. Although travelling widely, Zola spent his life in the Boston area. Obituaries in the Boston popular press, in academic journals, and in disability publications bear witness to Irving Zola's considerable impact on academic and public life. The Boston Sunday Globe commemorated a 'Brandeis University professor and champion of the rights of the disabled'. Writing in The Disability Rag and ReSource, activist and academic colleagues acclaimed Zola's seminal influence on 'the consumer perspective on health care, illness, and disability' (Scotch 1995: 30); his influential role in the Boston Self-Help Center and as founder-member of the Society for Disability Studies; and his work as founder-editor of the unfailingly edifying Disability Studies Quarterly. His influence on the sociology of health and illness has been considerable, and colleagues writing in Social Science and Medicine describe Zola as 'an innovative thinker in medical sociology and a pioneer in the sociology of disability' (Conrad et al 1995: v). While these tributes quite rightly enumerate matters of public record, many people have been touched by Irving Zola ('Irv' to his friends) in ways which are difficult to capture in inventories. He is described as '. . . a scholar, teacher, creator of networks, builder of bridges and inveterate activist' (Asch 1995:32), and as a '. . . friend, mentor, teacher, role model, leader, and supporter' (Scotch 1995:30). What underlies these accolades is a recognition of Irving Zola as someone in whom there was no artificial segregation of personal, political, and academic hfe. He embodied, in fact, a psychological and political resistance to segregation in all its manifestations, and the many human qualities to be found in his research and writing flow from this. He was a serious man with a sense of humour, an analytical thinker who enjoyed a good story, and a political activist who revelled in discussion with people who did not share his point of view. Much of Zola's political work in the self-help and disability movements was rooted in Boston, yet he was never parochial. His outlook was cosmopolitan and international. His sociology was bold and imaginative in scope, underpinned by a clear moral and political philosophy, and peppered with pertinent illustrations drawn from his own life. He was author of a number of papers - on culture and illness (Zola 1966), medical power (Zola 1972a), and pathways into health care (1973a) - which are rightly regarded as classics. Not only did these publications open up new
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Irving Kenneth Zola: an appreciation 109 areas of inquiry, they also display qualities of intellectual depth which make them remarkably salient to the problems facing both medical sociology and health care systems in our own time. During a visit to the USA in 1988 Irving Zola invited me to write a piece for Disability Studies Quarterly. I acquiesced uneasily. After all, Zola had been one of the inspirational influences on the development of the independent living movement, a movement of disabled people which I had criticised on a number of grounds, angering many disability activists in the process (Williams 1983). 'What sort of piece do you want?', I inquired, expecting a list of instructions about what not to say. 'Anything you want', came the unhesitating reply. After I had submitted my article (Williams 1988), close to the deadline, I telephoned Irv to make sure it had arrived. 'Is it OK?', I asked, expecting some expression of disapproval. 'Yeah, it's great', he said, 'just perfect'. 'Are you sure?', I replied somewhat surprised. 'Yeah, Yeah, just perfect', he insisted. I tell this story because I think it illustrates a quality which lies at the heart of Zola's sociology: his appreciation of dissent. Himself a dissenter with strong political views, he accepted and encouraged opinions he did not share. He exercised the sociological imagination through a commitment to truth, reason, and freedom (Mills 1970), but this did not lead him to assume that people who disagreed with him were dishonest, irrational, or intellectually confined. It is possible to regard Zola's work as a lifelong attempt to grapple with certain paradoxes arising from his willingness to takes sides and see things from different points of view. Zola recognised that where different points of view exist it is important to try and build bridges between them. However, he had no truck with the search for some kind of facile consensus, and he clearly understood that you can only build bridges after you have torn down barriers in free and open debate. A phrase which appears time and again in Zola's writing is: '. . . my contention is . . .'; and his most enduring publications are a series of contentions or arguments about subjects which concemed him deeply. Although I have started this paper with an unequivocal homage, my intention is to encourage a movement away from tributes to the man towards an appreciation of his work. This is no easy task because, as I have indicated, the man is so much bound up in his work, and his academic work is so intricately interwoven with the rest of his life. Nonetheless, in what follows I have tried to summarise what I see as the main sociological lines of Zola's thought and, where possible, draw attention to the connections between them. I hope that others will use this as the basis for further examination of Zola's life and work and a more detailed appraisal of his contribution to the social sciences.

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110 Gareth Williams Culture and Illness

Following some early work looking at crime and delinquency (McCord et al. 1959) Zola moved into the field of health and illness, spending periods as a research assistant collecting and collating data concerning mental health and ageing. A significant move occurred when, in 1959, he began a long and fruitful intellectual association with John Stoeckle at the Massachusetts General Hospital in Boston. The work they did with a number of colleagues in the early 1960s on the processes involved in seeking medical care, exerted an important influence on medical sociologists in the USA and elsewhere. A number of the publications arising out of this collaboration have remained key references for studies in two overlapping areas: the relationships between society, culture and illness and the reasons for people taking their symptoms to a doctor (Zola 1963a; Stoeckle et al. 1963; Zola 1964; Stoeckle et al. 1964; Zola 1966; 1972b; 1972d; 1973a). Research on illness behaviour in medical sociology has been dominated by the work of David Mechanic. However, while Mechanic's work always seemed orientated to a psychological perspective on behaviour, the work Zola undertook with John Stoeckle and others was unequivocally sociological. Many of our key concepts started life there, or thereabouts, some of them emerging from Zola's doctoral work (Zola 1962). The symptom iceberg, treatment delay, triggers to help seeking, and the link between ideas and actions in illness were all put on the map by Zola and his colleagues. Although Zola made use of socio-psychological concepts such as 'crisis', and happily drew upon epidemiological and routine health service data, his work was richly contextualised in terms of an argument about the material and cultural relations of society. This contextualisation is characteristic of his work, and is refiected in the kind of publications he produced. For example, one of the first papers to emerge from the work he did at the Massachusetts General Hospital was a 'selective review' of the literature on going to see the doctor (Stoeckle et al. 1963). In these days of information overload, and the new fashion for 'systematic reviews', the selective review which Zola and his colleagues produced is a fine model of scholarly work. Rather than simply presenting the findings from the empirical work, they placed them in the context of an argument about the psychological and social forces facilitating or limiting the seeking of medical aid. Starting with an observation of the statistical picture regarding the frequency and costs of visits to the doctor, they note that: 'This actuarial account . . . does not tell us about the human situations and contributions which the patient brings to his decision to go to the doctor' (Stoeckle et al. 1963:975). Their reasoning suggested that in view of the growing evidence of the ubiquity of symptoms in populations the 'norC BlackweU Publishers Ltd/Editonal Board 1995

Irving Kenneth Zola: an appreciation 111 mality' of illness (a theme which emerges repeatedly in Zola's work) and the comparatively low frequency of doctor-patient consultations, '. . . important factors besides the fact of medical disorder must intervene in bringing the doctor or in keeping him away' (Stoeckle et al. 1963:976). With reference to the ground-breaking work of Zborowski (1952) and Zola's own doctoral work, he and his colleagues began to explore what factors might determine the patient's reaction to and the meaning of his or her disease. In this and subsequent papers which will be better known to sociologists (Zola 1966; 1973a), Zola charted the general cultural factors, such as ethnicity, which influenced what people thought and did about symptoms. While Zborowski's study had been based on hospitalised patients, the work of Zola was based on interviews with people in the process of seeking help at an out-patient's clinic, prior to their being seen by the physician. From his comparison of prospective patients of Irish, Italian, and Anglo-Saxon origin, Zola was able to demonstrate that it would take different symptoms to bring these patients to the doctor, and that the same symptoms in these populations would lead to vastly different courses of action. Zola's work laid the foundations for the sociological study of both cultural differences in responses to symptoms, and the factors which 'trigger' decisions to seek medical care. He recognised that in addition to the broad social factors differentiating the actions of people from minority ethnic groups, individuals also had specific reasons - unrelated to any clinical measures of severity - for consulting the doctor at a particular point in time, rather than earlier or later. Zola was one of the first to recognise that the question 'Why?' had many meanings within lay discourses in western societies. Drawing on some of the socio-psychological work on life stress and crisis, Zola attempted to 'delineate some specific circumstances under which the decision to seek medical aid was made the trigger, the last straw, the patient's or his family's limit of tolerance' (Stoeckle et al. 1963:983). What is striking about Zola's contribution to the study of the relationships between culture and illness is his recognition of the broader social and cultural implications of his findings, and his willingness to theorise from his data: Despite its limitations, our data seem sufficiently striking to provide further reason for re-examining our traditional and often rigid conceptions of health and illness, or normality and abnormality, or conformity and deviance (Zola 1975:43 [1966]). To some extent it could be argued that Zola's contribution to this area of study was completed by the mid-1960s. In the harsh world of the 1990s Zola might be castigated for his moderate output, and the head of department would have questioned Zola's fitness for inclusion in the research assessment exercise - but just think what we would have lost!
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112 Gareth Williams His papers on culture and symptoms and pathways to the doctor have exerted an enormous influence on tbe sociological study of illness, and have been reprinted on numerous occasions. They are also rare examples of papers wbich demand an argument. Tbese essays were, and still are, profoundly relevant to the day to day business of public health and health care. In the context of the renewed concern in the National Health Service (NHS) and other western health care systems with 'unmet need' on the one hand, and 'inappropriate demand' on the other, this work remains, if anything, more relevant in its implications for our present situation than it was when the research was first undertaken. However, in order to understand these implications it is necessary to recognise the flexibility and imagination required to translate research into practice. As Zola himself argued with typical playfulness: When speaking of implications, I ask your indulgence, for I refer not merely to what leads in a direct line from the data but some of the different thoughts and directions in which it leads me (Zola 1989:234 [1973a]). It was not the data but the thinking Zola did about the data that suggested directions for future work. One of the implications of Zola's work wbich led in an interesting direction was how the universality of symptoms related to definitions of normality, and the way in which certain deviations from normality attract the labelling processes of agencies in society. If we are all symptomatic much of the time, and if we will all experience symptom-episodes with increasing frequency as we get older, if we are all potential cases, who manages the continuum between health and illness?
The dilenunas of expertise

Zola's early work appeared to point to the under-effectiveness of medicine in dealing with the routine, chronic health problems increasingly prevalent in ageing populations. His emphasis was on the neglect of those who needed health care and could not get it. During the late 1960s and early 1970s a disturbing question occurred to Zola which fired the next phase of his work. If '. . . virtually every day of our lives we are subject to a vast array of discomforts . . .', and we are all potentially medical cases, then '. . . how does one become a case and since of the many eligible, so few are chosen, what does it mean to be a case' (Zola 1989:236 [1973a]). Zola began to perceive that the implications of being a case fished out of a sea of equally symptomatic non-cases were not necessarily very healthy. From this point onwards a powerful and I would say creative tension between his public health concern with unmet need and his populist resis Blackwell Publishers Ltd/Editorial Board 1995

Irving Kenneth Zola: an appreciation 113 tance to social control comes into existence and persists in almost everything he produced thereafter. The dilemma can be expressed like this: illhealth is ubiquitous and many health needs are unmet within health care systems. However, entering the domain of medicine and its ancillaries is not necessarily appropriate, nor are its effects always benign. His ability to recognise this - as with many other things - stemmed partly from deep reflections on his own personal experiences; although it was only in his later work on disability that he brought these experiences up-front in his analysis. His post-polio, automobile accident-aggravated impairments had brought him into the embrace of the medical profession on many occasions. His classic examination of 'Medicine as an institution of social control' is, therefore, partly a cri de coeur, and notwithstanding the upsurge of neo-Foucauldian analysis in recent years, it contains an analysis of the nature of medical power that is at least as relevant today as it was then. The resounding sentences from Zola with which I opened this appreciation make plain his concem about the political implications of medical influence. The establishment of this new repository of truth, he continued: . . . is not occurring through the political power physicians hold or can influence, but is largely an insidious and undramatic phenomenon accomplished by "medicalizing" much of daily living, by making medicine and the labels "healthy' and "ill' relevant to an ever increasing part of human existence (Zola, 1972a:487). Zola's thesis was not entirely new, but such was the force of his argument that we have been conscious of its reverberations ever since. Moreover, his critique of medicine was conspicuous for its ecumenicalism. Intellectual assaults on psychiatry had become almost commonplace by this time; but Zola argued that those who confined their concem about medicalisation to psychiatry were missing the mark: 'For psychiatry has by no means distorted the mandate of medicine, but indeed, though perhaps at a faster pace than other medical specialties, is following instead some of the basic claims and directions of that profession'. (1972a:487-88). The dual concem with public health and civil rights led Zola to reflect on a number of apparent contradictions. He recognised, for example, that one possible interpretation of the epidemiological transition to chronic disease in westem societies was the 'dilution] of the exclusive control of the physician' (Zola and Miller 1973:165). In chronic diseases medical success is attenuated, lay knowledge and self-help/mutual aid increase, and other non-clinical health professionals play a much more central role. At the same time, however, medicine is '. . . grudgingly being pulled into greater and greater explicit involvement in the society of which it is a part' (Zola and Miller 1973:167), and he saw this as undermining the functional specificity which had been identified as one of the hallmarks of medicine in traditional Parsonian medical sociology.
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114 Gareth Williams Moreover, he could see that medicine's greater involvement in society stemmed from its combination of epistemological reductionism (the new genetics) and therapeutic holism (psychiatry and health promotion). On the one hand, there was the specialisation which focused medicine's attention on biological minutiae inaccessible to ordinary vision and language; and on the other hand, we could observe the increasing emphasis on treating the whole patient which involved consideration of an expanding range of non-medical factors - the ego, the stress of life, and the deprivations of inner-city living. It seemed to him that these two trends together had placed medicine on almost '. . . a n inexorable path towards becoming a major institution of social control' (Zola and Miller 1973:169), and it was this insight that provided the foundation for his essay on medicine as an institution of social control (1972). The main outlines of that essay are doubtless well-known. Like all essays it has a number of threads, not all of which are perfectly woven into the larger pattern. There are some loose ends which seem to be leading nowhere in particular, but nevertheless raise moral and political concerns that were close to Zola's heart at that time. Many of these concerns, such as drug safety and genetic counselling, remain salient. At the heart of the essay lies the argument contra Parsons and pro Freidson - that medicine is a moral and political enterprise which is not wholly benevolent. As a counter to the idea that medicine was less judgmental than religion or the law, and that calling something an illness was less blaming than labelling it a crime or a sin, Zola argued that medicine was playing an expanding role in the management of moral reputations and the minutiae of everyday life. This medicalisation of society involved what Freidson had identified as the medical profession's expanding jurisdiction over '. . . the label of illness and anything to which it may be attached, irrespective of its capacity to deal with it effectively' (Freidson 1970:251). Zola identified four ways in which the attaching process was taking place, leading to the medicalisation of society: through the expansion to what in life is deemed relevant to the good practice of medicine; through the retention of absolute control over certain technical procedures; through the retention of near absolute access to certain 'taboo' areas; and finally through the expansion of what in medicine is deemed relevant to the good practice of life. The consequence of these developments is that every aspect of our lives contains risks to health - living itself is injurious to health. In line with his philosophy of encouraging dialogue and debate, Zola did not want his essay to be seen as an attack on medicine. He saw the dilemmas of expertise in medicine as part of a crisis of modernity. Within this crisis medicine had become a battleground '. . . not because there are visible threats and oppressors, but because they are almost invisible; not because the perspective, lools and practitioners of medicine and the other helping professions are evil, but because they are not evil . . . not only is
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Irving Kenneth Zola: an appreciation 115 tbe process masked as a technical, scientific, objective one, but one done for our own good (Zola 1972a: 503). Even if medicine were able to add six inches to our heights, thirty years to our lives, and generally expand our potentialities, '. . . we should still be able to ask, what do six inches matter, in what kind of environment will the additional thirty years be spent, or wbo will decide what potentialities and potencies will be expanded and what curbed' (Zola 1972a:504). In his essay on social control, and in one or two later papers (Zola 1975a; 1975b), he was certainly raising profound concerns about tbe dilation of the medical gaze which has since come to be referred to as the 'rise of surveillance medicine' (Armstrong 1995). However, Zola's distinction lies in the way in which he managed to sustain an analysis of power that was multidimensional and sensitive to the diffusion of technologies and power relations, while also being committed to a strategy for social change that recognised the dilemmas and contradictions of expertise and the difficulties involved in empowering consumers. In a comment from the mid-1970s about what should be done to counter the dominant expert discourse on the new genetics he argued: I have no ready alternative, but I do have a direction. Instead of calling for scholarly conferences, 1 would call for public debates; instead of requesting physicians to share our information, I would encourage patients to demand it; instead of organizing commissions, I would organize patients, the last of the disenfranchised groups (Zola 1975a:561). Fifteen years of restraint in public expenditure and vilification of the 'culture of dependency' casts a different light on Zola's critique. What is the point in worrying about medicalisation when many people (not least in the USA) are unable to get access to the medicine they need? Why highlight the undramatic effects of the medical power of doctors when hospitals are being downsized with such enthusiasm by politicians? Zola was sensitive to these contradictions. However, he would certainly not have allowed his concern to defend health services to deflect his critique of medical power and the marginalisation of the patient, or his warnings about the disabling implications of healthism (Zola 1977). Zola never extended his analysis of medical power into a more fully worked out academic treatise. Instead he turned to bringing his growing personal, academic and political interest in disempowerment of health service clients into a forceful analysis of the nature of disability.
Representing disability

A reviewer recently complained that it was difficult to write a biography of tbe novelist Doris Lessing because she had written at such length
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116 Gareth Williams about herself. The same could be said of Irving Zola (1982b; 1983). This is particularly true of that period in his life and academic work dominated by a concern with the problem of disability. Disability provided an arena in which Zola was able to write politically about himself and autobiographically about politics and society, and his deepening contact with feminism (he was married to one of the authors of Our Bodies, Ourselves) led him to recognise that writing about personal experiences could itself be a political act. For someone whose politics had been fired in the civil rights and antiwar struggles of the 1960s, disability provided an arena in which his sociology, his activism, and his own personal experiences could connect. Zola did not duck Howard Becker's famous question: 'Whose side are we on?', and his answer was never in doubt: Through much of my professional academic career, I was perceived, and perceived myself, as an analyst and articulator of the underdog and the oppressed. I wrote about the elderly, the sick, the young, the misunderstood, the alienated. . . . But though I drew on my personal experience of hospitalisation to write and understand empathically, there was also a distancing. It was them, never myself, of whom I was really speaking (Zola 1983b: 144). In analysing the problems of people with disabilities Zola learned to speak about himself. Much of his writing during this period is self-revelatory, and he sometimes turned to the medium of the short story as a means of handling issues which were particularly painful or sensitive (Zola 1982c). However, Zola used autobiography and fiction not as an escape from politics but as a means of displaying the full impact of social and economic forces on the everyday lives of individuals; and, to paraphrase C. Wright Mills, Zola recognised that neither the life of a disabled individual nor the history of disabled people could be understood without understanding both. Zola was concerned to represent the interests of people with disabilities, and to explore new ways in which those interests could be represented. He preferred to talk about 'people with disabilities', putting people first, but he emphasised that in choosing certain terms he was '. . . not arguing for any "politically correct" usage but rather examining the political advantages and disadvantages of each' (Zola 1993c: 171). Voice is what social movements are all about (Zola 1993b), but there is no single, unequivocal authentic voice of disabled people (Zola 1988b), nor is there any set of definitions of the universe of disability which can or should be adopted as some kind of secular gospel. Throughout the 1980s, until his death, he was consultant and advisor to numerous associations and publications dealing with disability in general, and with specific impairments. These involvements underpinned his analysis of disability and his approach to policy and practice in health
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Irving Kenneth Zola: an appreciation 117 and welfare services. It might be difficult to understand exactly why and how this shift in Zola's work occurred when it did. Fortunately he tells us in his account of Het Dorp, a 65-acre village in the Netherlands specifically designed to house four hundred severely disabled adults (Zola 1982b). What started out as a sociological study became a characteristic blend of the personal and the political: What I have produced might well be called a socio-autobiography, a personal and social odyssey that chronicles not only my beginning acknowledgement of the impact of my physical differences on my life but also my growing awareness of the ways in which society invalidates people with a chronic disability (Zola 1982b:6-7). Zola's writing on disability has a number of different aspects. His early work drew on his own personal experiences and his involvement in the self-help movement in order to develop a critique of the rehabilitation system and its models of adjustment and adaptation. Along with many other activists Zola was becoming concerned with two interrelated problems: first that the rehabilitation process was not producing the kind of 'adjustments' that actually enable disabled people to live independently in society. Secondly, that even with good rehabilitation, the determinants of independence for disabled people were more to do with the organisation of the physical and social environment than with any professionally managed adaptation process. The fundamental principles of the Independent Living Movement of the early 1970s were that disabled people had a right to live independently in society, and that this independence could only be achieved by pulling down the architectural and social barriers which prevented disabled people from gaining full participation in economic and civic life. Through his involvement with the Boston Self-Help Center, Zola was a precursor rather than an instigator of the Independent Living Movement. He wrote about the principles of the self-help movement and its relationship to the movement for independent living and other social movements (Zola 1979a; 1986). He also wrote directly and analytically about independent living and its relationship to rehabilitation (Zola 1982d; Crewe and Zola 1983), and about the deformative aspects of the rehabilitation process (Zola 1981a; 1982a). During the early 1980s, Zola recognised that while his politics had to be unwavering in the articulation of demands for independence and an end to discrimination, there was more to a sociological analysis of disabled people's oppression than an empirical identification of environmental barriers conjoined with a conspiracy theory regarding the interests of professionals engaged in rehabilitation. In line with many other partisans in both Britain and the USA, Zola recognised the undermining power of the dominant ideology of disability which regarded 'it' - that is the thing from which the individual 'suffers' - as a personal tragedy. However, in
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118 Gareth Williams contrast to much of the work in this field Zola recognised that the oppression experienced by people with disabilities was a complex matter. Contrasting disability with race, for example, he argued that '. . . the social invisibility of people with a disability develops more insidiously. Children spontaneously express an interest in wheelchairs and leg braces, but as they grow older they are taught that: " . . . it's not nice to ask such things". . . . But why all this effort? Why this distancing of the chronically ill and handicapped? Why are we so threatening that we must be made socially invisible?' (Zola 1982b:200). The threat to be removed, Zola suggests, lies not just in society's failure but in the inevitability of one's own: When the 'able-bodied' confront the 'disabled', they often think with a shudder, 'I'm glad it's not me' . . . The threat to be dispelled is the inevitability of one's own failure. The discomfort that many feel in the presence of the aged, the suffering, and the dying is the reality that it could just as well be them (Zola 1982b:202). However imperative it may be politically to define people with disabilities as a minority group, it is a curious minority which will include us all if not today, then tomorrow, or the day after: It is clear that much has been achieved by recognising that people with a disability have long been treated as an oppressed minority and that much has been gained by using a civil rights strategy to enhance and clarify the rights of people with disabihties. On the other hand . . . only when we acknowledge the near universality of disability and that all its dimensions (including the biomedical) are part of the social process by which the meanings of disability are negotiated, will it be possible fully to appreciate how general public policy can affect this issue (Zola 1989:420). Zola had a clear grasp of the relationship between his own life with a disability, his struggle to find a language in which to speak about it, and the history of disabled people in the United States (Zola 1994). It was Zola's '. . . conviction that it is impossible to create a society without disease and disability' (Zola 1988a:380). There is no all-encompassing masterslave narrative, there is no simple schema ~ Marxist, Freudian, or Foucauldian - which will illuminate the matrix of power and knowledge within which disability exists, and there will be no simple revolutionary change in medicine or in politics which will deliver liberation. The oppression is not easy to see or articulate, and people speak in different voices: If one has been oppressed for thousands of years, one does not gain a voice overnight. One of the features of oppression is the loss not only of voice but of the tools to find it. . . . It will take us time to speak out, to learn what we have lost, to articulate what we need. But as I
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Irving Kenneth Zola: an appreciation 119 have tried to state here and elsewhere, the numbers trying to speak out are ever growing and tbe chorus of voices is increasingly diverse (Zola 1994:65). The disability movement in the USA has a history and a context different from tbat in Britain, and it would be dangerous to draw too literally from tbe former's successes and failures. Nonetheless, Zola's clear statement of the need for the disability rights movement to avoid exclusivity in its language and sectarianism in its politics seems to me to provide a clear ethical and strategic direction for those engaged in struggle in this country and elsewhere. In place of tbe monochrome languages of the 'medical model' on tbe one hand and the 'social model' on the other, we find in Zola a willingness to examine disability from many points of view, and a desire to understand the contribution the different voices have to make to our discussions about disability. Rather than merely castigating popular representations of disability, he explored them (1985; 1987a; 1987c); instead of uncritically eulogising writing by disabled writers because they were disabled writers, he paid them the respect of questioning their claims to authenticity (1988b; 1993b). He recognised the tension within the American movement between the orientation to achievement and 'validity' in the able-bodied world, and the creation of a disability culture puffed up with disability pride. In some of his later work, in particular, he discussed tbe enormous implications of ageing societies peppered with chronic illnesses for the development of the disability movement (Zola 1991b), pointing out that the processes of ageing were something that linked tbe interests of 'the able-bodied' to those of 'the disabled'. In the context of an occasionally intolerant debate over tbe correct language to use in talking about disability, Zola's work was a bold attempt to hold firm to the politics of disability while remaining free to explore its darker phenomenological waters^. He wanted to place at the forefront of any discussion of disability the bleak realities of economic deprivation, disenfranchisement, and marginalisation, while insisting on the continuing need to find a place for research in clinical rehabilitation and an interpretive social psychology of the personal worlds of people with disability and chronic illness. He believed, in short, that you could not deal politically with disability without confronting it personally, and that confronting it personally involved conflicts additional to the suffragism which has marked recent struggles in both Britain and the USA. Although Zola's commitment to disability politics is unquestionable, the depth of bis analysis led him in directions that many others in the movement have been reluctant to follow. 'Suffering', for example, is not a subject in favour within disability movements in Britain or the USA. For Zola, however, writing a chapter in a book on suffering provided an important educational opportunity. He wanted to remind professionals
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120 Gareth Williams whose self-proclaimed mission was the alleviation of the suffering of individuals that '. . . whatever other essential work we do, we must not only listen carefully to the voices of those we seek to help, but we must always keep an eye cocked upstream toward some of those not easily viewed forces . . .' (Zola 1992b:22). His work on disability is multidimensional, both in its substance and in its methods. It is both defiantly political and deeply personal. He was committed to a civil rights perspective on disability, but he recognised that an understanding of disability also required an anthropology of the body and the emotions. He wrote about it fictionally, factually, politically and sociologically. He wrote hard-nosed pieces on statistics and public policy (1993a), along with the autobiographical explorations of his own experience. He wrote for small publications produced by voluntary organisations and for medical textbooks, for government publications and for sociological joumals. He would alter his style and his approach depending on the audience he was addressing, but beneath his deconstructionist discernment of the instability of texts lay a clear and unwavering moral and political commitment to the necessity of dissent.

The value of Irving Zola

The evidence for and against Zola's likely long-term impact on the sociology and social sciences of health and illness is ambiguous. Within American medical sociology his work on culture and illness and on social control remain staple fare for students (Brown 1989; Conrad and Kern 1990; Cockerham 1995; Freund and McGuire 1995); and continuing reference is made to his analysis of medicalisation in recent British publications (Turner 1992; Nettleton 1995). However, the relevance of his work on disability, and his own writing on the body, for the sociologies of the body and the emotions are not always given the recognition due to them (Nettleton 1995). In a keynote paper on the future of medical sociology Zola (1991a) warned against the development of an oversocialised view of illness and disability, and argued powerfully for bringing our bodies and ourselves back in. J would argue that Irving Zola's writings on disability from the early 1980s onwards continued and elaborated the two core themes from his early work: the ubiquity of illness and the menace of medicalisation. Notwithstanding his own socio-autobiographical epiphanies and the process of 'coming out' as a disabled person, his work on disability would not have taken the shape it did without the intellectual framework he had established in his work on culture and illness and on medical power. Moreover, his studies of disability should not be confined to courses in disability studies. His reflections on the body and his analysis of his own emotional responses to being ill and impaired within history
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Irving Kenneth Zola: an appreciation 121 and culture deserve other audiences, and recent reprints of his writings suggest that some of his work on disability is now seen to have wider relevance (Schmitt and Moody 1994). Within the historiography of medical sociology there is a danger that much of his work will be reduced to a prologue to the more extended theoretical and empirical analyses of power and knowledge with which we have become so familiar (Gerhardt 1989). In my view this would be to misunderstand the qualities of his contribution. What marked Zola out was his willingness to be pluralistic without losing sight of the need for taking a position on issues of moral and political importance. He was a nonconformist who managed to avoid the vertigo of relativism and the arrogance of sectarianism. He acknowledged the need for dialogue between lay and professional perspectives but he remained profoundly critical of medical dominance and sceptical of those who would try to persuade us to be less hostile to its growing terrain of expertise (Bell and Zola 1992). It is not possible, in the end, to discuss what was distinctive about his sociology without talking about his political activism and his personal experiences of impairment and disability. There was in Zola a profound antidualism, originating perhaps in the Jewish culture in which he was brought up and of which he remained proud (Phil Brown, personal communication). Sociology was of no use unless it made connections with the world of policy and politics on the one hand and the realm of personal experiences and narratives on the other. The 'voice' which was so important to Zola within the disability movement, was the voice which told a story that connected with other peoples stories, providing the foundation for a collective identity, a common agenda, and a shared strategy for social change. Address for correspondence: Gareth Williams, Institute for Social Research, University of Salford, Crescent House, Salford M5 4WT.

Acknowledgements A number of people have told me of their sense of loss following the death of Irving Zola. Some have also sent useful material about him which has helped inform this appreciation. I would like to thank Barbara Altman, Phil Brown, Peter Conrad, David Pfeiffer and Al Wessen. Thanks also to Angela Greenall for help with the bibliography.

Notes
1 This paper contains a list of references and a 'selected bibliography'. The bibliography is a chronological listing of Zola's major publications in the sociology of health and illness, and cites the original place and date of publication. The references contain citations of work other than Irving Zola's, along with
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122 Gareth Williams references to later versions of earlier papers by him where 1 have quoted from them having been unable to gain easy access to the original. The original date of publication is then included in parenthesis for purposes of cross-referencing with the bibliography. In order to avoid unnecessary duplication I have not included in the reference list citations that are contained in the bibliography. 2 A recent seminar held at the University of Leeds, Accounting for Illness and Disability: Exploring the Divide, April 1995, was a welcome attempt to bridge some of the differences between medical sociologists and disability theorists in the understanding of these issues.

References
Armstrong, D. (1995) The rise of surveillance medicine. Sociology of Health and Illness, 17, 393-404. Asch, A. (1995) Remembering Irv, The Disability Rag and ReSource, March/April, 30-32. Cockerham, W.C. (1995) Medical Sociology (Sixth Edition), Englewood-Cliffs. New Jersey: Prentice-Hall Inc. Conrad, P. and Kern. R. (1990) The Sociology of Health and Illness: Critical Perspectives, New York: St. Martin's Press. Conrad, P., Brown, P. and Bell, S. (1995) Irving Kenneth Zola, 1935-1994, Social Science and Medicine, 41, 2, v-vi. Freidson, E. (1970) Profession of Medicine, New York: Dodd-Mead. Freund, P.E.S. and McGuire, M.B. (1995) Health, Illness, and the Social Body: A Critical Sociology (Second Edition), Englewood-Cliffs, New Jersey: PrenticeHall Inc. Mills, C W. (1970) The Sociological Imagination, Harmondsworth: Penguin. McCord. W.. McCord, J. and Zola, I.K. (1959) Origins of Crime: a New Evaluation of the Cambridge-Somerville Youth Study, New York: Columbia University Press. Nettleton, S. (1995) The Sociology of Health and Illness. Cambridge: Polity Press. Schmitt, R. and Moody, T.E. (eds) (1994) Alienation and Social Criticism, Atlantic Highlands, New Jersey: Humanities Press Intemational. Scotch, R. (1995) 'Remembering Irv' The Disability Rag and ReSource, March/April, 30-32. Turner, B.S. Regulating Bodies: Essays in Medical Sociology, London: Routledge. Williams, G.H. (1983) The movement for independent living: an evaluation and critique. Social Science and Medicine, 17, 1003-1010. Williams, G.H. (1988) Independent living: roiling back the frontiers of the State?, Disability Studies Quarterly, 8, 50-54. Zborowski, M. (1952) Cultural components in response to pain. Journal of Social Issues. 8, 16-30. Zola, I.K. (1962) Sociocultural factors in the seeking of medical aid, unpublished dissertation. Harvard University. Zola, I.K. (1975) Culture and symptoms: an analysis of patients' presenting complaints. In Cox, C. and Mead, A. (eds) A Sociology of Medical Practice. London: Collier-Macmillan.
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Zola, I.K. (1983b) The evolution of the Boston Self Help Center. In Jones, G. and Tutt, N. (eds) A Way of Life for the Handicapped: New Developments in Residential arui Community Care, London: Residential Care Association. Zola, I.K. (1989) Pathways to the doctor - from person to patient. In Brown, P. (ed) Perspectives in Medical Sociology, Belmont, Califomia: Wadsworth Publishing Company.

A selected bibliography
(In chronological order) Stoeckle, J.D., Zola, I.K. and Davidson, G.E. (1963) On going to see the doctor: the contributions of the patient to the decision to seek medical aid: a selective review. Journal of Chronic Diseases, 16, 975-989. Zola, I.K. (1963a) Socio-cultural factors in the seeking of medical aid - a progress report, Transcultural Psychiatric Research, 14, 62-65. Zola, I.K. (1963b) Problems of communication, diagnosis and patient care: the interplay of patient, physician and clinic organization. Journal of Medical Education, 38, 829-838. Zola, I.K. (1964) Illness behaviour of the working class: implications and recommendations. In Shostak, A. and Gomberg, W. (eds) Blue-Collar World, Englewood Cliffs, NJ: Prentice-Hall, 350-361. Stoeckle, J.D. and Zola, I.K. (1964a) After everyone can pay for medical care some perspectives on future treatment and practice. Medical Care, 2, 36-41. Stoeckle, J.D. and Zola, I.K. (1964b) Views, problems and potentialities of the clinic. Medicine, 43, 413-422. Stoeckle, J.D., Zola, I.K. and Davidson, G.E. (1964) The quantity and significance of psychological distress in medical patients - some preliminary observations about the decision to seek medical aid. Journal of Chronic Diseases, 17, 959-970. Zola, I.K. (1966) Culture and symptoms - an analysis of patients' presenting complaints, American Sociological Review, 31, 615-630. Zola, I.K. and Croog, S.H. (1968) Work perceptions and their implications for professional identity: an exploratory analysis of public health nurses. Social Science and Medicine, 2, 15-28. Kosa, J., Antonovsky, A. and Zola, I.K. (eds) (1969) Poverty and Health - A Sociological Analysis, Cambridge, MA: Harvard University Press. Zola, I.K. (1970) Whither medicine - three views. Social Science and Medicine, 4, 687-690. Zola, I.K. (1972a) Medicine as an institution of social control. Sociological Review, 20, 487-504. Zola, I.K. (1972b) The concept of trouble and sources of medical assistance - to whom can one turn, with what and why. Social Science and Medicine, 6, 673-679. Zola, I.K. (1972c) The problems and prospects of mutual aid groups. Rehabilitation Psychology, 19, 180-183. Zola, I.K. (1972d) Studying the decision to see a doctor: review, critique, corrective. In Lipowski, Z. (Karger Basel) (ed). Advances in Psychosomatic Medicine, 8, 216-236.
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Gareth Williams

Zola, I.K. (1973a) Pathways to the doctor - from person to patient, Social Science and Medicine, 1, 677-689. Zola, I.K. (1973b) On the problems of professing. Social Science and Medicine, 17, 80-82. Zola, I.K. and Miller, S.J. (1973) The erosion of medicine from within. In Freidson, E. (ed) The Professions and Their Prospects, 153-172, California: Sage. Zola, I.K. (1974) Reflecting on directions in psychotropic drug research. In Cooperstock, R. (ed) Social Aspects of the Medical Use of Psychotropic Drugs, 167-172, Ontario: Addiction Research Foundation of Ontario. Zola, I.K. and McKinlay, J.B. (eds) (1974) Organizational Issues in the Delivery of Health Services, PRODIST, N.Y. Zola, I.K. (1975a) The fix we are in . . ., Social Science and Medicine, 9, 559-661. Zola, I.K. (1975b) In the name of health and illness: on some socio-political consequences of medical influence. Social Science and Medicine, 9, 83-87. Zola, I.K. (1977) Healthism and disabling medicalization. In Illich, I., Zola, I.K., McKnight, J., Kaplan, J. and Shaiken, H. (eds) Disabling Professions, 41-69, London: Marion Boyars. Zola, I.K. (1978) A question of invalidity. Sante, Medecine et Sociologie, 256-276, Paris: Centre Nationale de la Recherche Scientifique. Zola, I.K. (1979a) Helping one another: a speculative history of the self help movement, Archives of Physical Medicine and Rehabilitation, 60, 452-456. Zola, I.K. (1979b) Oh where, oh where has ethnicity gone? In Gelfand, D.E. and Kutzik, A.J. (eds). Ethnicity and Ageing, 66-80, New York: Springer Publishing Company. Zola, I.K. (1979c) When getting into the field means getting into oneself. New England Sociologist, 1, 21-30. Zola, I.K. (1981a) Communication barriers between the 'able-bodied' and 'the handicapped'. Archives of Physical Medicine and Rehabilitation, 62. 356-359. Zola, I.K. (1981b) Structural constraints in the doctor-patient relationship: the case of non-compliance. In Eisenberg, L. and Kleinman, A. (eds) The Relevance of Social Science for Medicine, 241-252, Dordrecht, Holland: D. Reidel Publishing Company. Zola, I.K. (1982a) Denial of emotional needs to people with handicaps. Archives of Physical Medicine and Rehabilitation, 3, 63-67. Zola, I.K. (1982b) Missing Pieces: A Chronicle of Living with a Disability, Philadelphia: Temple University Press. Zola, I.K. (ed) (1982c) Ordinary Lives: Voices of Disease and Disability, (including original short stories by Zola), Watertown, MA: Applewood Books. Zola, I.K. (1982d) Social and cultural disincentives to independent living. Archives of Physical Medicine and Rehabilitation, 63, 394-397. Crewe, N.M. and Zola, I.K. (eds) (1983) Independent Living for Physically Disabled People. (Includes two chapters by Zola - 'Helping One Another - A Speculative History of the Self Help Movement' and 'Toward Independent Living: Constraints and Dilemmas'), San Francisco: Jossey-Bass. Sagov, S.E. and Zola, I.K. (1983) Chronic illness and disability. In Taylor, R.B. (ed) Family Medicine: Principles and Practice, New York: Springer-Verlag. Zola, I.K. (1983) Socio-Medical Inquiries: Recollections. Reflections and Reconsiderations, Philadelphia: Temple University Press.
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Zola, I.K. (1985) Depictions of disability-metaphor, message and medium in the media: a research and political agenda. The Social Science Journal, 22, 5-17. Zola, I.K. (1986) Reasons for non-compliance and failure of the elderly to seek care. In Moskowitz, R.W. and Haug, M. (eds). Arthritis and the Elderly, New York: Springer. Zola, I.K. (1987a) 'Any distinguishing features?' - The portayal of disability in the crime-mystery genre. Policy Studies Journal, 15, 485-513. Zola, I.K. (1987b) The politicization of the self help movement. Social Policy, 18, 32-33. Zola, I.K. (1987c) The portrayal of disability in the crime mystery genre. Social Policy, 17, 34-39. Zola, I.K. (1988a) Ageing and disability: Toward a unifying agenda. Educational Gerontology, 14, 365-387. Zola, I.K. (1988b) Whose voice is this anyway? A commentary on recent collections about the experience of disability. Medical Humanities Review, 2, 6-15. Zola, I.K. (1989) Toward the necessary universalizing of a disability policy. The Milbank Memorial Fund Quarterly, 67, Supplement 2, 401-428. Zola, I.K. (1990) Ageing, disability and the home-care revolution. (The 39th Annual, John S. Coulter Lecture), Archives of Physical Medicine and Rehabiliation, 71, 93-96. Zola, I.K. (1991a) Bringing our bodies and ourselves back in - reflections on past, present, and future 'Medical Sociology', Journal of Health and Social Behaviour, 32, 1-16. Zola, I.K. (1991b) The medicalization of ageing and disability. In Albrecht, G. and Levey, J.A. (eds) Chronic Illness and Disability Across the Life Course. Advances in Medical Sociology, 2, 299-315, JAI Press Inc. Greenwich, CT. Bell, S.E. and Zola, I.K. (1992) Constructing a canon? - a review essay of Uta Gerhardt's Ideas About Illness: An Intellectual and Political History of Medical Sociology, Social Science and Medicine, 34, 581-583. Zola, I.K. (1992a) Multiple sclerosis and the family: on the necessity of a larger context. In Kalb, R. and Scheinberg, L. (eds) Multiple Sclerosis and the Family, 97-107, New York: Demos Publications. Zola, I.K. (1992b) The social construct of suffering. In Stark, P.L. and McGovem, J.P. (eds) The Hidden Dimension of Illness: Human Suffering, 11-23, New York: National League for Nursing Press. Zola, I.K. (1993a) Disability statistics, what we count and what it tells us - a personal and political analysis, Jourrml of Disability Policy Studies, 4, 9-39. Zola, I.K. (1993b) In the active voice - a reflective review essay on three books. Policy Studies Journal, 21, (Symposium on Disability Policy - Part one). Zola, I.K. (1993c) Self, identity and the naming question: reflections on the language of disability. Social Science and Medicine, 36, 167-173. Zola, I.K. (1993d) The sleeping giant in our midst: redefining persons with disabilities. In Gostin, L.O. and Beyer, H.A. (eds) Implementing the Americans with Disabilities Act - Rights and Responsibilities of All Americans. Baltimore: Paul H. Brookes. Zola, I.K. (1994) Towards inclusion: The role of people with disabilities in policy and research issues in the United States - A historical and political analysis. In Rioux, M.H. and Bach, M. (eds) Disability Is Not Measles - New Research Paradigms in Disability, 49-66, Ontario, Canada: Roeher Institute.
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