Troubling Natural Categories: Engaging the Medical Anthropology of Margaret Lock 9780773589070

Citation preview

T ro u b l in g N at u r al Categori es

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Margaret Lock in Kyoto, 1984. (Courtesy of M. Lock)

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Troubling Natural Categories Engaging the Medical Anthropology of Margaret Lock Edited by

Nao mi Ad e l s o n, L e s l i e B u t t, and Kari na K i e l m a n n

McGill-Queen’s University Press Montreal & Kingston • London • Ithaca

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© McGill-Queen’s University Press 2013 isb n isb n isb n isb n

978-0-7735-4199-3 (cloth) 978-0-7735-4200-6 (paper) 978-0-7735-8907-0 (ep df) 978-0-7735-8908-7 (ep ub)

Legal deposit fourth quarter 2013 Bibliothèque nationale du Québec Printed in Canada on acid-free paper that is 100% ancient forest free (100% post-consumer recycled), processed chlorine free This book has been published with the help of a grant from the Canadian Federation for the Humanities and Social Sciences, through the Awards to Scholarly Publications Program, using funds provided by the Social Sciences and Humanities Research Council of Canada. McGill-Queen’s University Press acknowledges the support of the Canada Council for the Arts for our publishing program. We also acknowledge the financial support of the Government of Canada through the Canada Book Fund for our publishing activities. Royalties from the sale of this book will be donated to the Stephen Lewis Foundation.

Library and Archives Canada Cataloguing in Publication Troubling natural categories: engaging the medical anthropology of Margaret Lock / edited by Naomi Adelson, Leslie Butt, and Karina Kielmann. Includes bibliographical references and index. Issued in print and electronic formats. ISB N 978-0-7735-4199-3 (bound). – IS BN 978-0-7735-4200-6 (pbk.). – ISB N 978-0-7735-8907-0 (eP DF). – IS BN 978-0-7735-8908-7 (eP U B) 1. Medical anthropology. 2. Lock, Margaret (Margaret M.). I. Adelson, Naomi, 1958–, editor of compilation II. Butt, Leslie, 1960–, editor of compilation III. Kielmann, Karina, 1965–, editor of compilation

G N 296.T76 2013

306.4'61

C 2013-904358-6

This book was typeset by Interscript in 10.5/13 Sabon.

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Contents

Figures and Tables

vii

Acknowledgments

ix

Introduction: Margaret Lock and Medical Anthropology 3 N aomi A d e l son, L e sl i e B ut t, an d Kari n a Ki e l m an n 1 A Genealogy of Bodily Practices in Post-Soviet Cuba 16 P. Sea n B ro t he rto n 2 Therapeutic Modernism: Medical Pluralism, Local Biologies, and hiv in Côte d’Ivoire 34 V in h-Ki m Nguy e n 3 Rational Sex at the Margins of the State: Sex Work, Violence, and hiv Prevention in Papua, Indonesia 58 Leslie B ut t 4 The Gendering of Depression in Japan 80 Ju n ko K i ta na k a 5 From Spasmophilia to Social Phobia: Conversions of French Anxiety 102 Stephani e L l oy d 6 Unconventional Psychiatric Medico-Politicization: The Making and Unmaking of Behavioural Disorders in Pelotas, Brazil 123 Domini que p. B é h ague

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Contents

7 Cases and Narratives in Private Medical Providers’ Accounts of Managing h i v in Urban India 145 K a r in a K i e l ma nn 8 Embodied Molecules: Negotiating Medications in Troubled Times 168 A n n ette L e i b i ng 9 Digital Landscapes of Health N aomi Ade l son

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Afterword: Seeing Like an Anthropologist 209 Ma r g a r e t L oc k Selected Awards and Publications by Margaret Lock 223 Contributors

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Index 235

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Tables and Figures

Tables 1 Organization of the therapeutic economy in Abidjan

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2 Household expenditures for health in 1995 44 3 Rates of sexually transmitted infections in patients consulting for infertility 53 4 Prevalence of Hepatitis C in sickle cell patients 54

F ig u r es 1 Frontispiece: Margaret Lock in Kyoto, 1984 ii 2 Police and military conduct training exercises and patrol the streets of Wamena on a daily basis 64 3 Police with guns drawn at a church’s Christmas Day celebration 65 4 Lida selling pork and rice at the market 67 5 Margaret Lock at a Kyoto temple, 1987 210 6 Margaret Lock and participants at the workshop “Beyond Reductionist Thinking,” 1978 214 7 Participants at a Wenner Gren conference in Cascais, Portugal, 1988 215 8 Margaret Lock with Allan Young in Ottawa, 2007 220

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Acknowledgments

We thank all the participants of the symposium organized at the Canadian Anthropology Society meetings in 2007 where we honoured Margaret Lock on the eve of her retirement from teaching at McGill University. We are grateful to Pamela Wakewich for coorganizing the session and for her early work in helping to bring this volume forward. Richard Lock supplied images of Margaret from earlier stages of her career. Michelle Wyndham-West and Elysée Nouvet provided superb assistance in the editing and preparation of the volume. We thank the anonymous reviewers for their careful reading and constructive comments. Above all, we acknowledge the  impact Margaret Lock has had on medical anthropology: her professional standards, her perspicacity, her commitment, and her insights and integrity have been foundational to the discipline. We dedicate this volume to Margaret.

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Introduction: Margaret Lock and Medical Anthropology Naomi Adelson, Leslie Butt, and Karina Kielmann

When reflecting on the extraordinary growth of medical anthropology over the past thirty years, the names of a few scholars inevitably come to the fore. Margaret Lock has a prominent place among the handful of intellectuals who have defined medical anthropology as a major sub-discipline within anthropology, and she has made an indelible contribution to wider debates about the power relationships among health, medicine, and technology. Margaret’s extraordinary ability to combine imagination, acuity, and rigour in her scholarship has set the gold standard for many anthropologists. When Lock was awarded the prestigious Molson Prize in 2002, the Canada Council for the Arts acknowledged the scope of her accomplishments: Her remarkable work is at the heart of our understanding of current issues and preoccupations of the highest importance to society. She has applied her immense intellectual resources to the study of the human body, to life and death and to their relationship to technology and biotechnology. In this volume, comprised of a collection of essays written by former students of Margaret, we illustrate her exceptional impact by showing how her approach and her insights have informed the way in which many scholars today conduct research and practice their craft. The title of this volume, Troubling Natural Categories, echoes an essay written by Lock in 2001 in which she contemplated the role of

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medical anthropology in the new millennium. In that publication, Lock reflected on the broadening horizons of the field of medical anthropology as a discipline. One of its tasks, she argued, is to unsettle how we – social scientists, humanists, medical professionals, ethicists, and engaged citizens – comprehend medical categories as though they are facts of nature, with no associated social or moral implications. Lock has consistently urged those who study the production of medical knowledge and its application to question, or trouble, unexamined norms and moral certitudes, especially because “scientific truth claims often fit poorly with lived experience” (Lock 2001, 483). With an enduring commitment to the ethnographic process, Lock is ultimately concerned with the most fundamental questions of what it means to be human. She employs a broad perspective, one that meaningfully engages the subjective and physical experiences of individuals and collectivities in connection with health and illness. Furthermore, Lock integrates an assessment of subjective experience with the respective contributions made by health care practitioners, biomedical technologies, and political contingencies in the implementation of health care. The authors of this volume share a similar approach, and in this book we adopt the concept of troubling, problematizing, and scrutinizing that which is assumed to be natural and normal in connection with healing and human well-being. By questioning categories that are taken for granted, we engage with some of the key themes that have driven Margaret’s scholarship over her career: the pluralism of medical systems, processes of medicalization and the associated reduction of bodies to solely biological entities, the concept of local biologies, and the impact of medical technologies. We introduce these themes briefly in the following section to emphasize them as fields where Lock has made her most incisive contributions, and also as sites where the destabilizing impact of close scrutiny continues to fuel scholarship and signal important new domains of inquiry. Margaret Lock’s intellectual contributions to medical anthropology began, as did so many others within the discipline, with an inquiry into the dynamics of non-Western medical systems. Having been taught early in her doctoral studies that medical anthropologists should study only non-Western approaches to the management of health and illness, and by inference biomedical knowledge was to be left unexamined, Lock struggled unsuccessfully to balance her 1970s

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fieldwork findings of complex intersections across several medical traditions in Japan, with the era’s dictum of closed, discrete medical systems (see Afterword). Instead of adhering to the intellectual trends of the day, Lock trusted what her Japanese informants were telling her; this deep commitment to the centrality of ethnographic findings in generating theoretical arguments has continued to inform Lock’s work to this day. Lock’s first volume (1980) explored the complex array of East Asian medical practices in Japan, describing how practitioners were able to conceptualize more than one set of ideas about the body and integrate these differing conceptions into pluralist medical care. Patients also pragmatically availed themselves of multiple forms of therapy in their quest for restored health. Influenced by Ronald Frankenberg and Allan Young’s critiques of biomedicine, Lock began to argue that all medical systems, including that of biomedicine, are informed by cultural premises and are the products of intrinsically dynamic historical conditions (Lock and Gordon 1988; Frankenberg 1980; Young 1982). As Lock’s interest in the impact of biomedicine deepened, she focused on the complex process of medicalization. For her, medicalization refers to the ways in which biological events and life cycle transitions increasingly came under the rubric of medical diagnostic categories over the course of the twentieth century, and hence were transformed into medical conditions. Lock’s critiques of biomedicine and medicalization document how identities and subjectivities are made medical (2003, Lock and Nguyen 2010). That is, her work highlights the ways in which biological processes such as reproduction and birth (1998), adolescence (1991), menopause (1993), aging (2011), and death (2000, 2002a) come to be understood as individualized medical categories, and hence are seemingly devoid of political or social import, with profound implications for ideas about self and embodiment and for the allocation of responsibility for ill health. Her research into the process of medicalization has set the standard for two generations of scholars who have been researching the ways in which medical knowledge and practices are implicated in the understanding that individuals and societies hold about what is assumed to be “normal” and “natural.” Another fundamental insight Margaret Lock gained from the comparative study of medical traditions is the recognition of the diverse ways in which the material body is understood. Lock was initially influenced by the venerable tradition of Marcel Mauss

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(1973), who conceptualized the body as the first and most natural tool of man. Mauss argued that the body is universally made use of as a source of symbolic representations about the relationship of individuals to the social, cultural, economic, and political worlds in which they live. Lock, together with Nancy Scheper-Hughes, and inspired by the work of other early and mid-twentieth century thinkers, systematically engaged with philosophers, sociologists, anthropologists, literary theorists, and political scientists to produce an essay entitled “The Mindful Body” (Scheper-Hughes and Lock 1987; Lock and Scheper-Hughes 1990). In that influential essay, they proposed that research in the social sciences should conceptualize individual bodies as inevitably situated in specific relationships of power, both social and political, that both enable and restrict behaviour and well-being. For thirty years Lock has resolutely looked beyond unquestioned assumptions about “the body proper – that discrete, structured, individual myth of a European modernity” (Farquhar and Lock 2007, 10), in particular by refusing to reduce the body to biological knowledge alone. Bodies are not everywhere the same, she argues, and the putative naturalness and normality of a universal human body split into what is often glossed as nature and nurture is a false dichotomy with the result that the impact of environments, culture, and politics on the body in health and illness are inevitably given short shrift. Lock suggests a way for social scientists to move beyond dichotomous arguments toward an understanding of a contingent, mediated physicality by “proposing a new politics that seeks solidarity among bodies while refusing to resort to common sense presumptions about universal bodies or human nature” (Farquhar and Lock 2007, 4). Lock further refined her theorization of bodies with the concept of “local biologies.” This concept shifts our focus to the embodied experiences of health and illness in specific local contexts. Originally applied to her comparative study of female aging in Japan and North America in the 1980s and 1990s, local biologies in its most recent formulation is understood as “the way in which biological and social processes are inseparably entangled” (Lock and Nguyen 2010, 91; see also Lock 1993; Gaines 1992; Gaines and Davis-Floyd 2003). Local biologies are the product of what Lock and Nguyen term “biosocial differentiation,” that is, “the continual interaction of biological and social processes across time and space that eventually sediment into local biologies” (Lock and Nguyen 2010, 90). Lock

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thus theorizes physicality as resulting from an interrelationship among evolutionary and environmental variables in specific historical, culture, social, and political contexts. “Knowledge about biology,” writes Lock, “is informed by the social and the social is in turn informed by the reality of the material … The biological and the social are co-produced and dialectically reproduced, and the primary site where this engagement takes place is the subjectively experienced, socialized body … The material and the social are both contingent, both local” (Lock 2001, 484). From this position of contingency Lock takes on those who make grand claims for the uniformity and hegemony of either biology or culture. Lock enters debates head on to challenge those who defend racist or genetic determinist positions. She rejects the primacy of the normalized “western” material body yet also warns against deterministic arguments about the socially constructed body that leave the biological body black boxed, facilitating the standardization of normal, and necessarily consequent other abnormal bodies, that do not conform to these conceived standards (Lock 2006; Lock 1999). With the attendant questions of identity, morality, culture, and politics, Lock’s integrative perspective refreshingly rejects ideological rigidity. It is here too that we see the value of linking local biologies with the global transformations of the twenty-first century. The global reach of biomedical knowledge can transform local biologies through the availability of, or lack of access to, medicines, technologies, and health care. Lock’s model has been prescient, with scholars involved in genetic and genomic research increasingly recognizing that biological variation among populations is deeply implicated in disease causality and progression. However, we can only make sense of local biologies within the context of negotiated social and political identities, and the fluidity of social / biological interconnections. Lock proposes a dynamic, inter-subjective, and plural human experience that cannot be encompassed by the confines of a single articulation of the body (Farquhar and Lock 2007, Lock and Nguyen 2010). As we become more closely bound to our “biologized subjectivities,” Lock (2004, 313) observes that the emergence of new biotechnologies makes it possible to dissolve these boundaries and reconstitute them in, as she says, “remarkable ways” that are far from neutral and, in many instances, downright pernicious. Many concerned scholars, for example, have criticized how technological developments can turn bodily organs into black market commodities available to the

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highest bidder. Lock (2002b, 114) more subtly notes the “judiciously selected philosophies” that permit such procedures to be rationalized, and she elaborates on the complex global intersection of institutions – judicial, medical, ethical, and more – forming the values that enable these processes to occur (Lock and Nguyen 2010). Similarly, in her comparative research on the concept of brain death in Japan and North America, Lock deftly paints a picture of how the use of technology in emergency medical settings renders death itself ambiguous. Artificial ventilators keep alive bodies that are warm, have a pulse, and breathe, but which are no longer fully human. This unsettling condition forces a reckoning for the patient’s families and some physicians and nurses, who find it difficult to equate brain death with the end of human life (Lock 2002a). Application of a thoroughly routinized, vital technology such as the ventilator to create brain-dead bodies can muddy once unquestioned distinctions between human and nonhuman conditions, self and other, life and death, and obscure the multiple ways that moral and scientific judgments are intertwined. In the coauthored volume An Anthropology of Biomedicine (Lock and Nguyen 2010), Lock further scrutinizes the introduction and implementation of biotechnologies. For Lock, biomedical technologies are not merely devices and machines; they are tools with histories, usually made use of in association with entrenched ideas about progress and mastery of the natural world and improved human health and well-being. Today, they are an integral part of socio-technical systems that straddle institutions including hospitals, laboratories, biotech companies, and institutions of the state. In particular, many diagnostic technologies have transformed patient-healer relationships and what counts as valid knowledge about the body. The tendency to objectify these technologies renders opaque the moral assumptions that are associated with their use. Lock’s recent research shows how individuals who have undergone testing for a gene associated with Alzheimer’s disease respond to estimates and information about increased risk by nesting such information into pre-existing beliefs about Alzheimer disease causation, as well as who in their family is, in their opinion, at risk for this condition. In so doing, these research subjects make plain the social and moral aspects of genetic testing and screening technologies. The resultant effects of the application of biomedical technologies and their intersections with moral domains can never be established with any kind of certainty. Technologies complicate distinctions

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between human and nonhuman, self or other, so that it is not always possible to anticipate the moral implications of what is achieved by means of biotechnologies. Further, as Lock argues (2007, 280), the effects of biotechnologies cannot be separated from processes of knowledge production as “all knowledge associated with biomedical technologies is knowledge in the making.” Many of the essays included here were originally conceptualized for an international symposium held in Margaret Lock’s honour just prior to her retirement from teaching at McGill University in Montreal, Canada. The symposium highlighted the work of her many graduate students; we bring together in this volume some of those researchers and their current research contributions. Through their critical engagement with her ideas, the authors in this volume acknowledge their profound debt to the spectrum of research Margaret has produced and its impact on their thinking. In particular, they testify to the multiple ways in which Lock’s theories and methods set in motion larger conversations in the medical social sciences and humanities as well as within international public health and medicine. In the first three essays, Sean Brotherton, Vinh-Kim Nguyen, and Leslie Butt offer trenchant and sometimes disturbing examples of the entanglements of medicalized bodies within larger political projects. In the opening essay, Sean Brotherton draws upon the concept of embodied practices as a point of entry into the study of the complex biopolitics of medical care in Cuba. Brotherton traces the transition in health practices from the early revolutionary period in which the state actively promoted biomedical knowledge and curative services, through the period of political and economic embargo during which average Cuban citizens experienced an overall decline in living standards, including access to the public health services to which they were accustomed. For Brotherton, the concept of pragmatic subjectivities (Lock and Kaufert 1998) helps to render visible the often contradictory relationships among state health ideology, economic reform, and individual pragmatic health-seeking as individuals strategize their health-seeking behaviours in the widening divide between official rhetoric and an ailing health system. Vinh-Kim Nguyen similarly lays bare a crumbling public health infrastructure in his study of the pragmatics and economies of, in  particular, the rise of HI V infections in 1990s Côte d’Ivoire.

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Physician-anthropologist Nguyen offers a rich and thorough, if unsettling, perspective on what he calls the therapeutic economy of the city of Abidjan where therapeutic modernism rather than modernity prevails. Even, or perhaps especially, in the absence of a functional health system, local biologies emerge and are crystallized in the conflation of bodies with local histories, politics, and cultural practices. Pharmacy supplies are a sign of status; syringes are reused at for-profit, black market dispensers, and treatment regimens are shortened with the sole aim of making symptoms disappear, exacerbating local biological conditions of risk through which H I V and other sexually transmitted infections spread. In the next essay, Leslie Butt focuses on marginalized sex workers living in eastern Indonesia and the H I V prevention programs that serve to create a particular medicalized body and object of colonial intrusion. Butt examines intersections among narrow views of the body held by colonizers, in H I V prevention projects, and in the lived experiences of young women sex workers who are targets of these projects. Rather than looking at the technologies of H I V prevention, Butt follows Lock’s work in privileging the role of bodily processes and boundary formations. Thus, instead of focusing on problems with the gold standard of H I V -prevention practices – behaviour modification, condoms, and antiretroviral therapies – Butt highlights the kinds of bodily interventions that occur at, for example, a medical roundup of sex workers in a remote transit hub. For Butt there are inseparable links among militarized violence, the bodily regulation of targeted marginalized groups, and an international discourse about rational sexual practice in the context of H I V prevention projects. In the next three essays, Junko Kitanaka, Stephanie Lloyd, and Dominique Béhague address Lock’s contribution to the study of medicalization. Each author offers detailed ethnographic examples of how social and political conditions produce and valorize certain types of biomedical subjects through a kind of “naturalization of the social order through medicalization” (Lloyd, this volume). All three of these studies focus on what are effectively constituted as disorders of the mind, and yet each study, whether in Japan, France, or Brazil, offers compelling evidence of the ways in which we must make sense of the relationship between biomedical knowledge and conceptualizations of apparently natural categories of gender, age, or citizenship.

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In her study of gendered representations of depression in Japan, Junko Kitanaka asks how differences ascribed along the lines of gender affect the “politics of causality” (Kitanaka, this volume). With a master narrative of work-induced depression among men that is linked to a model of diligence, working to the brink of collapse is at once the sign of an ideal Japanese worker and a statement of protest against the conditions that bring men to this threshold. Psychiatrists are implicated in socializing men’s psychic pain, says Kitanaka, echoing Lock’s work on the medicalization of social conditions in Japan (1988; 1991), as those conditions become at one and the same time a commentary on and valid protest against, in this instance, overwork. Stephanie Lloyd highlights the naturalization of the social order through a study of the way in which shifting social priorities redefine and medicalize clusters of anxiety symptoms in new ways. Lloyd details the history of spasmophilia, a nervous disorder first described in 1940s French medicine and regularly diagnosed and treated until the early 1990s when it virtually disappeared and was replaced with the term nervous anxiety. Lloyd details the implications of the disparate logic of this new diagnosis. While the emergence and effective biomedical legitimation of the category of social phobic removes the far more deleterious inference of madness, refracted through a broader ontological lens, diagnoses of social phobia can be seen as offering competing truth claims about the essential productive French self, thereby naturalizing a particular social order in the production of a particular medical category. Working with children as well as their therapists, teachers, and wider social networks in Brazil, Dominique Béhague similarly reassesses the impact of social processes in defining particular behavioural disorders. Detailing the emergence and implications of counterpsychiatric discourse, in her essay Béhague explores the dense weave of competing theories of psychoanalysis in Brazil. Béhague challenges us to contemplate the implications of the ways in which medical knowledge, “gains currency and meaning outside of and even independent of the medical world” (Béhague, this volume). Béhague ultimately suggests that it is not the (medical or anti-medical) construction of the disease category that is significant, but rather how that concept is made meaningful by those implicated in its constitution. The final three essays of this volume highlight some of the different ways in which Lock’s concepts of local biologies and biomedical

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technologies in practice have been applied to studies in regions as disparate as urban India, Canada’s remote north, and new virtual worlds. Whereas Karina Kielmann explores how local biologies are moulded at the intersections of globalized and localized clinical practice in India, Annette Leibing and Naomi Adelson’s essays examine how virtual technologies impact upon individuals’ integrated notions of health and identity. As in Nguyen’s work, Kielmann explores the concept of local biologies that construe H I V in specific historical, political, and social contexts. She details the medical management of HIV /A IDS patients in urban India as an example of the way in which responses toward, and practices around H I V , are evolving through shifting moral economies of care. Kielmann describes the diagnostic practices of private medical practitioners in an era preceding the expansion of antiretroviral therapy programs, where clinical uncertainties are closely linked to changing ethics of care. By carefully teasing out the complexity of managing cases, Kielmann exposes emerging moral ambiguities in local conceptions of the patient that have direct and indirect impacts on the care of those with H I V /AI D S . Leibing’s work on “embodied molecules” takes local biologies to an important new level of investigation as she rethinks the embodiment of information through cyberbodies. Her study of a virtual chemical community considers how individuals are connected as communities through a particular form of biosociality. The group members, brought together through the shared experience of taking drugs for Parkinson’s disease, work to define the way these drugs inform how they understand their social selves, and how their sociality in a virtual space affects their choices around their drug regimens. The local is remapped here as Leibing draws us into the new virtual communities of chemical cultures. Lock’s exploration of the practical use of biotechnologies underpins Adelson’s study of the role of virtual technologies and e-health initiatives in Canada’s northern First Nations communities. Health information and communication technologies (ICTs) are realigning health practices in the remote North; the Cree at times take up and at other times set aside the biomedical authority with which these initiatives are aligned. Adelson explores health ICTs as “technologies in practice,” processes that are neither neutral nor evenly accessible but that thrive today as fundamental elements in the creative transformation of contemporary First Nations health discourses and practices. Adelson, Leibing,

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and Kielmann together further our understanding of how biotechnologies as diverse as protocols and e-health forums serve to variously individualize or collectivize experiences of health and illness as processes of management that are sometimes at odds with normative practices. Margaret Lock has written a personal afterword to this volume which traces her academic and geographic trajectory from the vicissitudes of British schooling to her work in biochemistry labs, from a North American road trip which ended, eventually, in a PhD in anthropology from Berkeley, to her long and distinguished tenure as the Marjorie Bronfman Professor in Social Studies in Medicine at McGill University (now Emerita). In her personal reflections, Margaret reasserts her insistence on the fundamental value of a social sciences perspective on matters relating to peoples’ health. Medical anthropologists, as close observers of everyday lives, have a vital role to play in the study of how institutionalized practices and local realities are made manifest in the illness experience and in practices of healing and health preservation. How can we succeed in this task, asks Lock, if we work alone? Margaret demands an active engagement: [As we] question the concepts and truth claims of the world of bioscience as well as those made by politicians and policymakers … [we must] also be … [willing] to engage in activity with the Other, whether this means with political activists, committed scientists, other social scientists, policy-makers, NGOs, or the media. For too long the remarkable insights resulting from so much good research in medical anthropology have been mainly unnoticed by society at large. This must change, and will only come about through our own concerted efforts (Lock 2007, 284). We have written our contributions in the spirit of Margaret Lock, to honour her but also to work with her to expand medical anthropology beyond its theoretical and disciplinary boundaries and to question the ways in which concepts of health, illness, and the body are normalized in and through processes of biomedical advancement. By challenging the status quo through our research we are directly engaged, alongside Lock, in understanding, explaining, and alleviating the scope of human struggle and distress.

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R e f e r e nce s Farquhar, J. and M. Lock. 2007. “Introduction.” In Beyond the Body Proper: Reading the Anthropology of Material Life, edited by M. Lock and J. Farquar, 1–16. Durham and London: Duke University Press. Frankenberg, R. 1980. “Medical Anthropology and Development: A Theoretical Perspective.” Social Science and Medicine 14: 197–207. Gaines, A.D. 1992. “Medical / Psychiatric Knowledge in France and the United States: Culture and Sickness in History and Biology.” In Ethnopsychiatry: The Cultural Construction of Professional and Folk Psychiatries, edited by Atwood D. Gaines, 171–201. Albany, NY : State University of New York Press. – and R. Davis-Floyd. 2003. “Biomedicine.” In Encyclopedia of Medical Anthropology: Health and Illness in the World’s Cultures. Volume 1: Topics, edited by C. Ember and M. Ember, 90–109. Dordrecht: Kluwer Academic. Lock, M. 1980. East Asian Medicine in Urban Japan: Varieties of Medical Experience. Berkeley: University of California Press. – 1988. “New Japanese Mythologies: Faltering Disciplines and the Ailing Housewife.” American Ethnologist 15(1): 43–61. – 1991. “Flawed Jewels and National Dis / order: Narratives on Adolescent Dissent in Japan. Festschrift for George DeVos.” Journal of Psychohistory 18: 507–31. – 1993. Encounters with Aging: Mythologies of Menopause in Japan and North America. Berkeley: University of California Press. – 1998. “Perfecting Society: Reproductive Technologies, Genetic Testing, and the Planned Family in Japan.” In Pragmatic Women and Body Politics, edited by M. Lock and P. Kaufert, 206–39. Cambridge: Cambridge University Press. – 1999. “Genetic Diversity and the Politics of Difference.” Chicago-Kent Law Review 75(1): 83–111. – 2000. “On Dying Twice: Culture, Technology and the Determination of Death.” In Living and Working with the New Medical Technologies, edited by M. Lock, A. Young and A. Cambrosio, 233–62. Cambridge, uk: Cambridge University Press. – 2001. “The Tempering of Medical Anthropology: Troubling Natural Categories.” Medical Anthropology Quarterly NS 14(4): 478–92. – 2002a. Twice Dead: Organ Transplants and the Reinvention of Death. Berkeley: University of California Press.

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– 2002b. “Inventing a New Death and Making it Believable.” Anthropology and Medicine 9(2): 97–115. – 2003. “Medicalization and the Naturalization of Social Control.” In Encyclopedia of Medical Anthropology: Health and Illness in the World’s Cultures. Volume 1: Topics, edited by C. Ember and M. Ember, 116–25. Dordrecht: Kluwer Academic. – 2004. “Unbound Subjectivities and New Biomedical Technologies.” In A Companion to Psychological Anthropology: Modernity and Psychosocial Change, edited by C. Casey and R.B. Edgerton, 298–314. Malden, M A: Blackwell Publishing. – 2006. “Postmodern Bodies, Material Difference and Subjectivity.” In Dismantling the East-West Dichotomy: Essays in Honour of Jan van Bremen, edited by J. Hendry and H.W. Wong, 38–45. London: Routledge. – 2007. “Medical Anthropology: Intimations for the Future.” In Medical Anthropology: Regional Perspectives and Shared Concerns, edited by F. Saillant and S. Genest, 267–88. Malden, MA : Blackwell Publishing. – 2011. “Seduced by Plaques and Tangles: Alzheimer’s Disease and the Cerebral Subject.” In Neurocultures: Glimpses into and Expanding Universe, edited by F. Ortega and F. Vidal, 201–16. Frankfurt am Main: Peter Lang. – and D. Gordon. 1988. Biomedicine Examined. Dordrecht: Kluwer Academic. – and P. Kaufert. 1998. Pragmatic Women and Body Politics. Cambridge: Cambridge University Press. – and V.-K. Nguyen. 2010. An Anthropology of Biomedicine. Oxford: Wiley-Blackwell. – and N. Scheper-Hughes. 1990. “A Critical-Interpretive Approach in Medical Anthropology: Rituals and Routines of Discipline and Dissent.” In Medical Anthropology: A Handbook of Theory and Method, edited by T. Johnson and C. Sargent, 47–72. Westport, CN: Greenwood Press. Mauss, M. 1973 (1937). “Techniques of the Body.” Economy and Society 2(1): 72–88. Scheper-Hughes, N. and M. Lock. 1987. “The Mindful Body: A Prolegomenon to Future Work in Medical Anthropology.” Medical Anthropology Quarterly ns1: 6–41. Young, A. 1982. “The Anthropologies of Illness and Sickness.” Annual Review of Anthropology 11: 257–85.

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1 A Genealogy of Bodily Practices in Post-Soviet Cuba P. Sean Brotherton

Margaret Lock’s path-breaking scholarship on the anthropology of the body, spanning her earlier work on demystifying the assumptions of the natural body to more recent work on the commodification of bodily life and the materiality of the body, has set a foundational precedent in medical anthropology for critically reworking the relationship between dominant ideologies and the lived experience of bodies (Lock 1993a; 1993b; 1997; 2002; Lock and Schepher-Hughes 1987). Buttressed by rich ethnographic research in both Japan and North America, and with an acute attention to social theory, Lock’s comparative methodology has been pivotal in challenging the takenfor-granted notion of a culture-free science, thereby unhinging the practice of biomedicine from the mundane social, political, and economic vagaries of everyday life. In doing so, Lock has constructed a robust theoretical idiom by which to examine the micro-meso-macro construction of the body as both an object and subject of anthropological inquiry. As Lock and Farquhar argue in a recently edited volume (2007, 11), “To make a topic of the body is to study cultural, natural, and historical variation in whole worlds.” This essay, then, seeks to continue and build on Lock’s longstanding ethnographic and theoretical project of “troubling natural categories.” By charting diverse narratives relating to the body and health in post-Soviet Cuba, I explore the Cuban government’s changing policies and objectives in the primary health care sector.1 These narratives speak to the myriad ways in which the spectre of the Soviet past and the uncertainty of the island’s political future have

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served as potent signifiers of the nation’s vulnerability, particularly as the withdrawal of Soviet aid and the magnified effects of the US embargo manifest at the level of individual bodies and reverberate through the multiple spheres of quotidian life. My analysis here is informed and shaped by what I call a genealogy of individual bodily practices. Following Rosendahl (1997), I define individual practices as the complex ways in which individuals communicate, improvise, enact, and revise ideology. Yet the task of genealogy, according to French philosopher Michel Foucault, is to expose a body totally imprinted by history. Genealogy thus provides an empirical methodology to explore the truth claims individuals make regarding the knowledge they have of themselves, their bodies, and society at large, while at the same time understanding such knowledge as a relation of power. By unraveling the multiple historical layers that contribute to bodily formations, both culturally and materially, a genealogy of individual bodily practices provides an analytical lens to examine the lived experience of bodies. This approach resonates with Farquhar and Lock’s (2007, 11) recent call for “new empirical research [that] opens a domain of human experience to the imagination that is at once subjective and objective, carnal and conscious, observable and legible.” Combining historical, epistemological, and ethnographic modes of analyses, my goal in this essay is to explore how, in a context of growing economic scarcity in the health sector, individual citizens with highly medicalized understandings of their body negotiate the role of the state in providing health and social welfare, and their own personal desires to seek comprehensive health care, increasingly at their own expense. I argue that many individual citizens with access to foreign currency are increasingly (and ironically) becoming active health consumers in a climate of ever more scarce resources.

S tat e s o f C r is is : H e a lt h and Well-Bei ng in t h e P o s t- S ovi et Era Cuba’s socialist revolutionary period – also know as the Período Revolucionario Socialista (1959–present) – has used health as a defining characteristic of its reform. Underpinning this commitment to health was the notion that the health of the individual is a metaphor for the health of the body politic, effectively linking the bodies of individuals to the political project of socialism and its governmental

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apparatuses. Since 1959, the country’s socialist health ideology, in part predicated on the idea that health care is a basic human right, has been successful both at the level of ideology and in practice. This health ideology operated as a form of biopower that regulated, “social life from its interior, following it, interpreting it, absorbing it, and rearticulating it” (Hardt and Negri 2000, 23). This effectively produced a new kind of medicalized subjectivity in Cuba, one in which a prolific network of health professionals has encouraged citizens to become increasingly attuned to biomedical understandings of what constitutes bodily health and physical well-being. One of the results of embracing this subjectivity has been the increasing reliance on biomedical intervention and innovation. Physicians and their patients, particularly those who are ill, became much more invested in what DelVecchio Good (2007) calls “a politics of hope,” whereby the power of biomedicine, infused with a millenarian quality, takes center stage as the primary therapeutic answer. This socialist health care doxa (Bourdieu 1977) has saturated people’s everyday lives and mundane practices, producing state-fostered expectations and feelings of entitlement to a particular form of biomedical health care. In 1991, however, the Cuban government declared that socialism was under siege and formally announced the beginning of the Período Especial en Tiempos de Paz (“Special Period in Time of Peace,” hereafter, período especial). The logic of everyday life in post-Soviet Cuba was thus radically transformed under the rubric of wartime measures in times of peace. Operating in many ways as a “state of exception,”2 government policies institutionalized corrective measures by creating new and refining older juridical-legislative policies (migratory laws, banking practices, employment categories, and access to basic needs and services, to name but a few) as part and parcel of a general program of economic recovery and revival.3 In 1991, Julio A. García, the former head of the Cuban Chamber of Commerce, described the Communist Party’s logic behind these changes as follows: “We have to think like capitalists but continue being socialists” (cited in Eckstein 1994, 103). As was evident from García’s statement, within a context of “crisis” (both of the state and indivdiual bodies), the island started charting a new course for the social, political, and economic survival of the country’s socialist revolution. With the advent of the período especial in the early 1990s, the structural reforms implemented in the face of mounting macroeconomic changes directly affected the political economy of the health

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sector. Buffered for more than three decades by highly favourable terms of trade with the former Soviet Union and the CO M E CO N 4 countries that had been major catalysts in its social development, Cuba was now faced with a severe economic crisis. This crisis was triggered and compounded by Cuba’s nearly complete dependence on the Soviet Union and the economic embargo the US government imposed on Cuba more than forty years earlier. Between 1984 and 1989, 77 per cent of Cuba’s export trade was attributable to sugar, and nearly 70 per cent of import-export trade was with a single country, the Soviet Union (Paster and Zimbalist 1995). As a result, between 1989 and 1993 the country’s gross domestic product (G D P) fell 35 per cent and exports declined by 75 per cent (P AH O 2001). Complicating the aftermath of the Soviet withdrawal from Cuba was the US government’s tightening of economic sanctions against Cuba in the 1990s. The Torricelli Act5 (also known as the Cuban Democracy Act) in 1992 and the 1996 Helms-Burton Bill6 made clear that the intent of US foreign policy toward Cuba was to foster the socialist government’s defeat through what US Senator Jesse Helms called, “a final push over the brink” (Brenner and Kornbluh 1995, 39). In late December 1997, Cuban vice-president Carlos Lage estimated that the US embargo and other political factors cost the Cuban economy US $800 million a year, equivalent to about 20 per cent of Cuba’s current import bill. The situation threatened the survival of the Cuban revolution, particularly in regard to its continued commitment to basic human needs. However, the economic crisis also undermined health by affecting the availability of food, medicines, and equipment, and this subsequently challenged the developments achieved in public health.7 This was exacerbated by the legalization and circulation of the US dollar shortly after the “crisis” began, which effectively destabilized the state’s ability to control wealth and income disparity within the population. The redefining of the socialist state through the lens of crisis directly influences the multifaceted ways in which Cubans construct narratives about bodily and psychological health in a rapidly changing social, economic, and political context. Such narratives form an active part of people’s imagination and circulate in multiple registers: real, symbolic, material, state-sponsored, and personal. They are also mobilized to variously construct notions of victimhood, social suffering, martyrdom, patriotism, resilience, resistance, and physical pain. The crisis narrative, therefore, becomes a way to

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discuss the complex dynamics that have historically influenced Cuban culture and shaped the construction of cubanidad (Cuban national identity). In the following vignette I examine the different ways individual Cubans and primary health care physicians are negotiating macroeconomic changes in their everyday lives. I present the experiences of individuals attended to by physician-and-nurse teams in small clinics known as consultorios del médico de la familia (M E F ) in designated health areas (área de salud). Reflected in this vignette is the growing sense among a number of people whose access, or lack thereof, to foreign currency has shaped their experiences in the city of Havana. Consultorio San Lazaro Living in a small two-bedroom apartment with her mother, husband, and son in a run-down area of central Havana, Sra Isabella Esparza discussed how her daily struggles with the primary health care system resulted from the massive changes brought about by recent macroeconomic problems and the widespread corruption that had ensued. Her mother, Sra Adelfa Castillo Esparza, paralyzed on the left side of her body, was in need of regular checkups and medication. However, Sra Castillo was unable to walk, so the family physician had to visit her house on his local afternoon rounds. As Sra Esparza stated: I can’t bring my mother to the consultorio because she cannot walk and to carry her there I have to bring the wheelchair down three flights of stairs. Then, I would have to carry my mother down. Of course, for whatever emergency, I call the consultorio. Sometimes they come. Other times they tell me they cannot come. More often than not they do not actually come. When they arrive they often do not have a stethoscope or equipment to take blood pressure. It is like, why come then? I understand though, there is no motivation to do the work they are supposed to do. Imagine, they make 400 pesos per month. That is about $20 in divisa (foreign currency), which is not enough to buy anything. The médicos work with nothing. The conditions they work in are horrendous. They often do not have papers to write out prescriptions; worse yet, they know the drugs are not available and so they cannot solve the most basic problems that physicians should be able to solve. I have never solved any of my mother’s health problems at the médico de la familia. The médicos are just

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like us; they have to take the camello (long bus mounted on a flatbed truck) and make a living. There is no incentive to go door-to-door anymore. If it wasn’t for my friend Robercito who works in one of the major hospitals and basically works out everything, you know, from behind – that is how things work now – what would I do with my mother? My aunt in Miami is really the one who sends my mom the money to buy the foods for her special diet, and the drugs and sterilized needles that I need to inject her medication. I have learned to administer the drugs myself. That is what things have come to these days. Do you understand me? I think when the médico de la familia was started up it was able to do its job because at that time the equipment for sterilization and the basic medical tools were readily available for physicians to do their jobs effectively. However, you have to remember in 1984, when the program started, there was not an economic crisis. The year the economic crisis began, in 1990, things started to fall apart. After the período especial, the médico de la familia couldn’t do injections because there were no sterilized needles; there was no alcohol for disinfection; if you needed cotton or bandages you had to bring your own. Slowly, the médico de la familia no longer solves our problems. Sra Esparza’s narrative reflects the concerns of several of the citizens I interviewed including the family physicians themselves. As several family doctors made clear, they are forced to work with severe limitations and, at times, feel that their role is more that of a social worker than a health care provider. As one physician in Sra Esparza’s neighborhood stated: People do not respect us like they did before. Now, we cannot solve even the most basic problems. I have to look into patients’ eyes and say, “Sorry, I do not have needles,” or “Maybe you can get a relative who lives abroad to send you this certain kind of medication.” For me, these are hard things to say. Basically, you have to learn to invent something out of nothing. This physician, however, was blunter than several others I interviewed, who evaded the topic by choosing to use oblique phrases like, “We make do,” or “Things are tough, but Cubans are notoriously inventive.”

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Importantly, though, rather than passively accept the massive shortages of important medications and supplies, Sra Esparza was very methodical in her attempt to ensure her mother’s health care. Having given up her job as a factory worker several years earlier to take care of her mother full-time, Sra Esparza has been fastidious in making contacts at various institutions and pharmacies in order to help facilitate her mother’s care. Sra Esparza participated in what Ledeneva (1998) terms, “an economy of favours” by creating relationships with socios (informal partners) or affiliates in strategic places. She would bring coffee to a local pharmacist who, in return, would put aside the essential drugs that she needed, when they were available, to be purchased in Cuban pesos. As an anthropologist, I was not exempt from Sra Esparza’s network of contacts. She often called on me, as a foreign passport holder, to purchase prescription drugs at the international pharmacies8 in local hotels. In addition, when I was in Canada, Sra Esparza managed to write to me through her son’s university email address, asking me to bring a range of medicines and medical supplies, several of which I was unable to obtain without a prescription. Sra Esparza, instead of consulting with her designated family doctor for regular checkups as stipulated in the MEF program, would call her friend – a physician in a large hospital in the city center – and get him to attend to her mother personally. Given that Sra Esparza’s mother was not mobile and the subsidized taxis, historically designated for bringing patients to the hospitals for their health appointments, were now involved in the thriving private informal economy and operated as boteros (illegal taxis charging ten to twenty Cuban pesos to go between specific locations), Sra Esparza relied strictly on tourist taxis. These taxis charged in US dollars but picked her up from her house, took her to the hospital, and then dropped her back home. With a small propina (tip), the tourist taxi drivers would often help her mother up and down the stairs of her apartment building. Dependent on the monthly remittance from her aunt in Miami, who sent anywhere from $80 to $100 a month, Sra Esparza also washed clothes and cleaned apartments for people in her building to earn the extra money needed to meet her mother’s health care needs. Sra Esparza’s husband, a militante (Communist Party Member) and former member of the F AR (Cuban Revolutionary Armed Forces), was unhappy that his wife was working as a maid and regularly reminded her that the government had worked years to overcome such class-based inequalities.

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Clearly frustrated, Sra Esparza argued that despite her informal activities she was still a revolucionaria, but her mother’s health came before politics. On the various occasions that I spoke with Sra Esparza, she would always respond to my standard greeting “How are you?” with her characteristic phrase, “I am still here, my dear, luchando (struggling).” Sra Esparza’s son was in his last year of university where he was studying immunology. Legally, her son could not work while registered in school and was also dependent on the remittances sent from Miami to buy his school clothes, books, and the money he needed for his meals. The end of every month, when Sra Esparza’s son picked up the Western Union money transfer from the aunt in Miami, was always fraught with tension for Sra Esparza. As she remarked, her son increasingly demanded more and more money to purchase brand-name clothes and shoes, now sold at the US dollar stores. While critical that her son was trying to “live like a capitalist,” Sra Esparza was upset that the state was selling overpriced consumer goods in US dollars to a population that was, for the most part, officially paid in Cuban pesos. As she said, the state had created unreasonable, and in many cases unobtainable, desires amongst young people. Youth, in addition to a growing number of adults, wanted the consumer goods that were increasingly visible in contemporary Cuban society. She said: In the 1970s and 1980s everybody basically had the same kinds of things with little variation. People had Soviet-style boots, the same kind of pants and shirts, and so on. But now, we have kids with brand-name clothes sent from their relatives abroad and American movies every weekend on T V with the latest stuff. These things have an influence on el pueblo (the people). Sra Esparza’s husband, Sr Ramón Crespo, a fifty-five-year-old retired military lieutenant, was not formally interviewed as he claimed not to have much experience with the health care system. However, he often participated indirectly by offering a sort of armchair commentary. Asking to speak to me one day, Sr Crespo sat down with me, offered me a glass of aged whiskey, and explained why people in general, particularly young people, should value la Revolución.9 Sr Crespo, who had no relatives living outside of Cuba – a point of pride – had great disdain for his wife’s extended family that had fled Cuba to the United States in the early 1960s. He often referred to his wife’s

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relatives in Miami as the gusanera (worms).10 Sr Crespo made it clear that the remittances his wife’s aunt sent were strictly for his motherin-law’s health care needs and that he saw none of the money. In fact, he refused to allow his wife’s family, when they visited from the United States, to visit his home and equally refused to greet them on the phone when they called. Sr Crespo argued that although the Cuban government was going through a hard time, things had been slowly changing for the better in recent years. Unable to live on his state pension, Sr Crespo had recently returned to work, with the help of the F A R, as a manager of a distribution warehouse for a popular chain of state-run stores. His company regularly awarded Sr Crespo vouchers – material incentives to reward him for his good work. These vouchers could be redeemed in dollar shops and allowed him to purchase electronic goods, bedroom furniture, and, more recently, a new washing machine all for Cuban pesos at one-for-one US dollar prices. For example, his new washing machine, valued at $200, was purchased with a voucher for 200 Cuban pesos ($10). The government cared, he argued, for those who worked well and were dedicated revolucionarios. Sr Crespo was involved in several of the mass organizations and regularly participated in the voluntary labour campaigns. Throughout the years, the local C DR (Committees for the Defense of the Revolution) had presented him with various medals and certificates of accomplishment for his revolutionary activities. The problem with the health care system, Sr Crespo noted, was the deteriorating values of health care professionals who were tempted by desires for material wealth and had thus fallen into the trap of making money on the side through informal practices. Sra Esparza, whom I interviewed on several occasions without her husband present, felt that her husband was out of touch with the reality of el pueblo. She said the state was taking care of selected people, especially the Communist Party members and people in the military. However, while she was fortunate to have some material luxuries provided through her husband’s job, the rest of el pueblo was left to fend for itself. In prerevolutionary times, Sra Esparza remarked, her mother was an associate of the Spanish insurance scheme known as mutualistas.11 In those days, my mother was attended to by La Covadonga Hospital, which la Revolución renamed Salvador Allende

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Hospital after the assassinated Chilean president of the same name. I recall when I was six or seven, my mother had a uterine infection and was treated there. Everything was beautiful and the staff provided you with everything including well-cooked meals and clean linen. I am not a racist, but blacks were not allowed in specific sections of the La Covadonga, and there were certain standards of hygiene. Now, if you go to the same hospital you need to bring a bottle of bleach to clean the floor and you see roaches everywhere. My mother went there two years ago and the service was horrible! I would never go back. Sra Esparza’s discussion reflects her critical stance on the state’s current inability to provide equitable social and health welfare. Yet she is also nostalgic – and optimistic – about the semiprivatized health care system that existed in the pre-revolutionary period where, as she stated, “you got what you paid for.” Sra Esparza and her husband’s experiences are important because they reflect the challenges faced by individual citizens in the context of massive social and economic changes. Sra Esparza is torn between her commitment to la Revolución and her firsthand experiences with a health care system that is rife with massive shortages and that has required her to become increasingly vigilant in working through socios to secure services and resources in a system overrun by informal practices. Although Sr Crespo has less direct experience with the health care system, his narrative is equally important. The ideas and values that he discusses reflect sectors of the Cuban population that, despite massive social upheaval, hold steadfast to the objectives of la Revolución and see the recent turn of events as a temporary product of the effects of US influence. This influence, Sr Crespo’s argues, has been facilitated by the return of Cubans living abroad and the money they send to promote capitalist values in an attempt to subtly undermine la Revolución. This vignette draws attention to how the Cuban population, which had grown accustomed to the privileges provided by the “cradle to grave” health and social welfare system, itself intimately tied to social and economic equality, is now witnessing a slow chipping away of its foundations. As a result, individuals are becoming active in addressing and administering their own health care needs and, despite the state’s disapproval of these practices, pragmatically rationalize their actions by drawing on the state’s socialist discourse of, “access to

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health care as a basic human right.” Individuals view themselves as filling in the gaps created between the state’s rhetoric of health and social welfare and its inability to actually provide these services. In many instances, lo informal in the health sector, as constituted through individual bodily practices, operates in parallel with the objectives of the state’s health care programs, for example, in seeking necessary medications and medical supplies through remittances and socios. In other instances, individuals undermine the institutions of the state by siphoning limited resources away from official channels to informal networks, which leads to increases in self-medication and autonomous practices. Significantly, informal health practices have become part and parcel of the so-called normal functioning of Cuba’s socialist health care system. Rather than seeing the proliferation of informal health practices as critiques of socialism, I suggest that the population is responding to the changing – and in many ways diminishing – role of the state, particularly in areas where individual citizens believe the state should remain strong. This is to say, the citizenry has internalized Cuba’s socialist health ideology, using it as their justification for engaging in informal practices and making their own health care needs a priority. It is important to stress, however, that these recent changes in Cuba’s social and political arena do not necessarily spell the socialist government’s imminent demise, but rather such changes must be situated within the changing objectives of the state itself.

D is c u s s io n : T h e P r agmati c S tate a n d S o c ia l is t B o dy Poli ti cs A large corpus of anthropological literature shows that when, for political reasons, open dissent is virtually impossible, the body very frequently becomes a site for the inarticulate expression of resistance (Lock and Farquhar 2007, 491). Cuba’s período especial has witnessed the state’s slow withdrawal from certain sectors in the political economy of health care, demanding that individuals increasingly engage in a complex web of practices to mitigate the increasing pressures of daily life. These practices, often classified as informal or lo informal, depend on a network of clientbased relations with individuals known as socios. These activities include, but are not limited to, the bolsa negra (black market), which trades in goods stolen from state enterprises; involvement in legal and

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illegal small private businesses for profit (known as cuenta propia and el bisne); and hustling and prostitution (commonly referred to as jineterismo). Under a system characterized by sociolismo (rather than socialismo), social relationships are no longer strictly defined by state politics or affiliations but by personal contacts and socios framed by access to material resources (such as medicine, food items, and luxury goods) and specialized services (including unofficial access to health care services and supplies). In terms of health care, people increasingly engage in lo informal to obtain foreign currency or, more recently, its equivalent, pesos convertibles,12 often as proactive strategies to seek out therapeutic resources that the state can no longer provide. The development of informal practices and alternative forms of social networking are gradually replacing the state as the sole means of addressing the problems of everyday life. These sinuous ties that weave diverse groups of people together, cutting across personal, institutional, familial, state-sponsored, and private spheres, constitute the micropolitics of health. By advocating an approach that focuses on a genealogy of individual bodily practices, this essay emphasizes that while we cannot take for granted that self-directed agency is everywhere, neither can we assume that subjects do not try to modify, manipulate, or escape the effects of those forces that construct them (Abu-Lughod 1990). In this way, this approach draws attention to multivalent individual and group responses to the changing nature of state power. As Margaret Lock and others have noted, resistance is complex, blurred, and fractured, and at times functions in the form of pragmatic behavior, bodily reform, or the quotidian practices of routine actions (Boddy 1989; Comaroff 1985; de Certeau 1988; Fassin 2007; Lock 1993b; Lock and Kaufert 1998; Lock and Farquhar 2007; Scott 1990). In Pragmatic Women and Body Politics, for example, Lock and Kaufert (1998, 1) stress that “medicalization and power are ideas which must be grounded historically and culturally, as must resistance, agency and autonomy.” We need, then, to give stronger consideration to how ordinary people incorporate governmental health imperatives to suit their own ends. An approach that focuses on individual bodily practices offers a theoretical lexicon to examine the sometimes contradictory and overlapping relationships among the individual practices of everyday citizens, economic reform, and state power. In this way, I seek to rework the customary model for understanding state power as imposing

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itself on the subject who, weakened by its force, comes to internalize or accept its terms.13 This approach, rather, stresses that state power, “can only achieve an effective command over the entire life of a population when it becomes an integral, vital function that every individual embraces and reactivates on his or her own accord” (Hardt and Negri 2000, 23). This approach, then, seeks to create a “history of the present” or “to create a history of the different modes by which, in our culture, human beings are made subjects” (Foucault 1983, 208). It advocates that understanding how bodies are being (re)imagined in Cuba’s post-Soviet context is to treat them as a palimpsest by placing the present and its pasts side by side, so that both can be seen and interpreted simultaneously (Quiroga 2005). The title of this concluding section, “The Pragmatic State and Socialist Body Politics,” can be read in two ways, one inseparable from the other. Cuba’s post-Soviet economy has increasingly forced individual citizens to respond to the lucha (struggles) of everyday life with a renewed pragmatism; in short, their everyday lives are consumed by practices that are, following de Certeau’s (1988) argument, by their very nature “tactical.” On the other hand, in recent years the institutions and multiple bureaucracies of the state have increasingly modified policies, objectives, and age-old ideological positions in response to the challenges of being at the margins of the global economy – thus exemplifying the strategies of a pragmatic state. The (re)emergence of what I call “pragmatic subjectivities,” in contemporary Cuba is expressed by individuals negotiating, and in some cases manipulating, the very contradictions of the state itself. In recent years, Castro’s pronouncement that “socialism is under siege” and his calls for the population to luchar (struggle) have been effective in the health sector, although the results have not unfolded in a teleological fashion. It has become increasingly difficult to disentangle practice from ideology, as individuals, physicians, and health officials juggle multiple subjectivities in the pursuit of positive health outcomes. Historically, access to health care, from the most basic primary care to advanced tertiary care, had been one of the hallmarks of the Cuban state’s revolutionary mandate. As the gaps widen between the material benefits of the state’s provision of basic human needs and the actual lived experience of Cubans, a new biopolitical project is at work. This project seeks to divert the moral expectations, assumptions, and entitlements of the citizenry away from the “cradle to grave” social welfare the socialist state so painstakingly fostered for

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more than three decades to be more in line with the forces of market capitalism. Yet, we might also take heed to Aiwha Ong’s (2006) recent work that cautions us against formulaic applications of Foucault’s concepts (such as biopower and governmentality) to diverse sociopolitical contexts without first defining and delineating our understandings of state sovereignty. Ong’s analysis traces how the selective appropriation of different neoliberal forms of governance in different regimes, be they authoritarian, democratic, or communist, speak to the fluidity (and, at times, rigidity) of definitions of the state and the subjects that are produced within these relationships. In contemporary Cuba, it is this very “friction,” to borrow Tsing’s (2005) term, between the trickle-down effects of global capitalism and the embodied practices of individuals seeking health and well-being that exemplify the body as a productive site for ethnographic inquiry. Through this focus on the body, we can examine the interrelationships among subject-formation, economic reform, and new forms of statecraft. Thus, I am deeply invested here in contributing to what Farquhar and Lock term “a materialism of lived bodies” (2007, 10). As they note, “The problematic of perceiving bodily life in its actual empirical and material forms invites scholars to see social multiplicity more clearly and to adjust our actions more sensitively to the depths at which human Being varies” (ibid, 11). Such a formulation opens a domain through which to examine how different sociopolitical fields create and transform political subjectivities. It forces scholars to delve into the nebulous field of embodiment, asking pointed questions about how subjects respond, enact, and rearticulate ideological assumptions in their everyday practices. For the ethnographic work explored in this essay, it provides a lens to examine how Cubans’ experience of state-sponsored programs of holistic health care has not only shaped their definitions of individual bodily health but has also surpassed biological understandings of the body and become entangled in a mesh of rights, entitlements, and expectations that are products of the island’s revolutionary history.

no t e s

1 This chapter draws on field research conducted over more than a decade (1998–2010) in the city of Havana, chronicling the experiences of family physicians, everyday citizens, public health officials, and research scientists participating in the country’s primary health program, central to what is

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2

3

4

5

6

7 8

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known as the Family Physician and Nurse Program, Programa del Médico y la Enfermera de la Familia (M EF). Within times of crisis, Agamben (2005, 5) asserts, the “state of exception” refers to the expansion of the powers of government to issue decrees that have the force of law. In the process of claiming this power, questions of sovereignty, citizenship, and individual rights can be diminished, superseded, and rejected. For instance, the government introduced reforms that sought to restore import capacity and stimulate domestic supply; increase the economy’s responsiveness to the world market; search for foreign capital and technology; allow free-market sales of surplus produce, handcrafts, and some manufactured goods; increase the categories of self-employment allowed by the state to cover an additional one hundred freelance occupations; and permit the registration and taxation of private rental activity (EIU 1997). The Council for Mutual Economic Assistance, 1949–91, was an organization comprising the countries of the Eastern Bloc and a select number of socialist countries elsewhere in the world. The Torricelli Act forbids foreign subsidiaries of US companies from trading with Cuba and places a six-month US port ban on ships that have called at Cuban ports. The Helms-Burton Bill temporarily halted all direct flights and remittances to Cuba, and allowed US investors to take legal action in the American courts against foreign companies that were utilizing their confiscated property in Cuba. See, for example, the report produced by the A A WH 1997. Since the mid-1990s international pharmacies, such as the Cira García International Clinic among others located in various hotels, have appeared across the city of Havana. These pharmacies are sponsored by Cuba’s “Health Tourism” industry, also known as Salud y Turismo S.A. They cater, theoretically, to foreigners on the island paying in foreign currency. However, Cuban citizens, if accompanied by an individual with a foreign passport, can also purchase prescription drugs, ranging from medicines for chronic health problems to chemotherapy, and rudimentary medical supplies such as gauze, antibiotic ointments, and vitamins, at these locations (see Brotherton 2005; 2008 for further discussion of this theme). In Cuban Spanish, all references to the 1959 Cuban revolution are capitalized. I have italicized this term in Spanish in order to convey how individuals express feelings and ideas about la Revolución as an agent capable of acting on an individual.

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10 This term is used in Cuba to refer to anyone who does not support the Cuban revolution. Often used in reference to Miami Cubans in exile, it is also used interchangeably with “the Mafia of Miami.” 11 Mutual benefit societies – also known as mutualista – consisted of exclusive hospital plans organized to serve descendants from specific geographic regions of Spain who paid monthly membership dues similar to medical insurance collectives. 12 In November 2004, Cuba’s dual economy was further mired in controversy when Cuban authorities eliminated the circulation of US dollars throughout the country. The Cuban Central Bank (B C C) issued a new currency, the Cuban convertible peso, or peso convertible, also known by the acronym CU C and popularly referred as the chavito. 13 See Butler’s (1997) important discussion on the paradoxical nature of state power.

R e f e r e n ce s Abu-Lughod, L. 1990. “The Romance of Resistance: Tracing Transformations of Power Through Bedouin Women.” American Ethnologist 17(1): 41–55. Agamben. G. 2005. State of Exception. Chicago: The University of Chicago Press. American Association for World Health (AAWH). 1997. Denial of Food and Medicine: The Impact of the U.S. Embargo on the Health and Nutrition in Cuba – An Executive Summary. Washington, D.C. Boddy, J. 1989. Wombs and Alien Spirits: Women, Men, and the Zar Cult in Northern Sudan. Wisconsin: University of Wisconsin Press. Bourdieu, P. 1977. Outline of a Theory of Practice, translated by R. Nice. Cambridge: Cambridge University Press. Brenner, P., and P. Kornbluh. 1995. “Clinton’s Cuba Calculus.” n ac l a Report on the Americas – Cuba, Adapting to a Post-Soviet World 29: 33–9. Brotherton, P.S. 2005. “Macroeconomic Change and the Biopolitics of Health.” Journal of Latin American Anthropology 10 (2): 339–69. – 2008. “‘We have to think like capitalists but continue being socialists’: Medicalized Subjectivities, Emergent Capital, and Socialist Entrepreneurs in post-Soviet Cuba.” American Ethnologist 35(2): 259–74. Butler, J. 1997. The Psychic Life of Power: Theories in Subjection. Stanford, CA: Stanford University Press.

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Comaroff, J. 1985. Body of Power, Spirit of Resistance: The Culture and History of a South African People. Chicago: University of Chicago Press. de Certeau, M. 1988. The Practice of Everyday Life. Berkeley and Los Angeles: University of California Press. DelVecchio Good, M. 2007. “The Medical Imaginary and the Biotechnical Embrace.” In Subjectivity: An Ethnographic Investigation, edited by J. Biehl, B. Good, and A. Kleinman, 362–280. Berkeley: University of California Press. Eckstein, S. 1994. Back From the Future: Cuban Under Castro. Princeton: Princeton University Press. Economic Intelligence Unit (EI U). 1997. Cuba: Country Profile. United Kingdom. Fassin, D. 2007. When Bodies Remember: Experiences and Politics of a i d s in South Africa. Berkeley: University of California Press. Farquhar, J. and M. Lock. 2007. “Introduction.” In Beyond the Body Proper: Reading the Anthropology of Material Life, edited by M. Lock and J. Farquhar, 1–16. Durham and London: Duke University Press. Foucault, M. 1983. “The Subject and Power.” In Michel Foucault: Beyond Structuralism and Hermeneutics, edited by H. Dreyfus and P. Rabinow, 208–28. Chicago: University of Chicago Press. Hardt, M. and A. Negri. 2000. Empire. Cambridge, MA: Harvard University Press. Ledeneva, A. 1998. Russia’s Economy of Favors: Blat, Networking and Informal Exchange. Cambridge: Cambridge University Press. Lock, M. 1993a. Encounters with Aging: Mythologies of Menopause in Japan and North America. Berkeley and Los Angeles: University of California Press. – 1993b. “Cultivating the Body: Anthropology and Epistemologies of Bodily Practice and Knowledge.” Annual Review of Anthropology 22: 133–55. – 1997. “Decentering the Natural Body: Making Difference Matter.” Configurations 5: 267–92. – 2002. Twice Dead: Organ Transplants and the Reinvention of Death. Berkeley and Los Angeles: University of California Press. – and J. Farquhar, eds. 2007. Beyond the Body Proper: Reading the Anthropology of Material Life. Durham and London: Duke University Press. – and P. Kaufert, eds. 1998. Pragmatic Women and Body Politics. Cambridge: Cambridge University Press.

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– and N. Scheper-Hughes. 1987. “The Mindful Body: A Prolegomenon to Future Work in Medical Anthropology.” Medical Anthropology Quarterly 1: 6–41. Ong, A. 2006. Neoliberalism as Exception: Mutations in Citizenship and Sovereignty. Durham: Duke University Press. Pan American Health Organization (PAH O). 2001. Country Health Profile: Cuba. Washington, DC. Pastor, M. Jr. and A. Zimbalist. 1995. “Cuba’s Economic Conundrum, NA C L A.” Report on the Americas - Cuba, Adapting to a Post-Soviet World 29: 7–12. Quiroga, J. 2005. Cuban Palimpsets. Minneapolis: University of Minnesota Press. Rosendahl, M. 1997. Inside the Revolution: Everyday Life in Socialist Cuba. Ithaca: Cornell University Press. Scott, J. 1990. Domination and the Arts of Resistance: Hidden Transcripts. New Haven: Yale University Press. Tsing, A. 2005. Friction: An Ethnography of Global Connection. New Jersey: Princeton University Press.

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2 Therapeutic Modernism: Medical Pluralism, Local Biologies, and HIV in Côte d’Ivoire Vinh-Kim Nguyen

I n t ro du c t io n : T h e r a peuti c Economy as E t h n o g r a p h i c Object I trained under Margaret Lock in the years after she published her seminal work Encounters with Aging (1993). After three years of practising full-time as an emergency and H I V physician, the grind of medical practice had left me longing for an approach that went beyond the clinical or epidemiological sciences. Neither helped me make sense of what I saw in the clinic. As I began working in West Africa as a community organizer with HIV groups, most of the anthropological work I encountered viewed the epidemic through the lens of either culture or political economy. The realities I encountered were more complex and, by then, included growing international intervention and the use of pharmaceuticals. I remember clearly a conversation with Margaret, as we made our way one snowy evening to a talk at Université de Montréal, where she tied together her earlier work on medical pluralism in Japan with the concept of local biologies that had emerged from her research of menopause. “The relationship between biology and culture,” Margaret explained, was at the heart of both and indeed would emerge more clearly in her later studies of brain death, organ transplantation, and dementia. Biomedicine itself needed to be examined as both a cultural system and a potent operator of biological change. By then, I had realized that calls for more biomedical interventions would neither fix the H I V

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problem nor remedy – and indeed might even exacerbate – the structural violence that underlay it. This essay explores the relationship between urban medical pluralism and local biologies. I examine the therapeutic economy of West Africa’s second largest city, Abidjan, Côte d’Ivoire. A major hub of trade and culture, the former jewel of the French Empire, Abidjan was also the epicentre of the AIDS epidemic in West Africa (De Cock et al. 1989, 1990, 1991; Iliffe 2006). This essay argues that the local history of healing and biomedicine shaped the emergence of the HIV epidemic in Abidjan. I trace this history through an examination of Abidjan’s therapeutic economy. This term expands on Lock’s work on Japan’s medical pluralism to examine the multiple therapeutic options available and the strategies used to obtain them. This therapeutic economy allows us to understand how the HIV epidemic in Abidjan followed a trajectory distinct from other places in West Africa. Lock (1993) introduced the term “local biologies” to describe how biological and social processes are inseparably entangled over time and result in human biological difference. Abidjan’s HIV epidemic is an example of how local historical, cultural, and biological factors intertwined and crystallized as a local biology. An important and overlooked part of this story resides in the nature of the therapeutic economy in Abidjan, which is not so much modern as modernist. That is, although “modern” medicine (biomedicine) is dominant – whether in market share, financial turnover, consumption practices, or therapeutic itineraries – it is not embedded in a network of institutions that ensures its rational use. This failure to embed biomedicine in rational social institutions marks a therapeutic incoherence. The anarchic use of biomedicine that resulted magnified the ability of social relations to influence biology. The coexistence of multiple medical traditions and biomedicine has been a focus of medical anthropology since the 1970s. By 1980, Margaret Lock had argued, in her study East Asian Medicine in Urban Japan, that, despite distinctly different philosophical and historical heritages, different medical systems were not impermeable to change, adaptation, and hybridization. Schematically, it can be said that the study of medical pluralism arose from the examination of the therapeutic itineraries initiated by affliction in a given community. The manner in which individuals seek therapy emerged from studies of patterns of resort. These showed how multiple medical traditions

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could be accessed either serially or simultaneously and drew attention to “therapy managing groups” that debate options and make decisions on both economic and cultural grounds about which practitioners should be consulted and when (Augé and Herzlich 1984; Feierman and Janzen 1992; Janzen 1978). Therapy managing groups are sites of conflict and consensus where the relative efficacy of different medical traditions, presumed aetiologies, and previous experiences with therapy are debated. For instance, a classical therapy managing group would involve elders in a family who might discuss the aetiology of a daughter’s illness – is it witchcraft or malaria? These discussions may involve appeal to cultural beliefs about disease aetiologies or they may be simply pragmatic. Aetiological diagnoses are used to make decisions about what may be the most effective therapy and who might be the most proficient therapist. Such decisions are not purely cultural, however, as which view prevails is a product of its advocate’s social position in the family, her economic influence, and perceived social capital (that is, her ability to mobilize social resources or to influence other family members). Therapy thus always involves a form of exchange, which may be monetary, as in the purchase of medicines, or may constitute moral economies as individuals call on networks of obligation and reciprocity to negotiate access to therapeutic resources.1 The constraints that shape therapeutic itineraries are therefore embedded in regimes of value (Appadurai 1986) and occur within what Fassin (1996) has labelled a “political space of health” mapped out along three axes: the legitimation and exercise of therapeutic power by practitioners, collective responses to misfortune such as the institutions of public health or traditional systems for managing affliction, and the manner in which power embodies social relations by distributing diseases differentially across groups. Fassin (1996) shows how the politics of health extends beyond state policy and practices to include a diverse array of struggles over therapy. Lock’s 1980 study of clinics, doctors, and patients in Kyoto was instrumental in showing how a therapeutic economy could be the object of an ethnographic study and could be described in terms of both the therapeutic options in a given location and the strategies used to access them. I draw on both Lock and Fassin to frame a historic and ethnographic examination of Abidjan’s therapeutic economy, focusing on the period leading up to the fall of Côte d’Ivoire’s First Republic on Christmas Eve 1999.

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A Short History of Biomedicine in Côte d’Ivoire’s Therapeutic Economy: From Colonial Ambivalence to Postcolonial Embrace During the colonial period, Ivoirians’ suspicions of biomedicine stemmed from their first encounters with colonial public health. In the 1920s and 1930s, mobile teams scoured the countryside screening for trypanosomiasis by lining up villagers and palpating their cervical lymph nodes. Those with swollen nodes had their lymph fluid aspirated with a needle. People found to have the parasite were subjected to painful and, it turned out, ineffective injections. As a result, during this period villagers often fled into the bush when word spread that public health teams were in the vicinity. Some Ivoirians even had their cervical lymph nodes excised by charlatan surgeons to avoid the injections (Domergues 1986). Gradually confidence increased. Biomedical advances in the treatment of infectious diseases, heralded by the arrival of antimicrobials in the 1950s, swayed Africans, particularly given that malaria was a highly visible cause of mortality. Urbanization also had an important impact. In the city, contrary to what was customary in the country, patients came voluntarily to seek out health care. As with urban planning and education, the first decade after independence saw an ambitious expansion of modern health care, with significant investments in infrastructure. The Faculté de Médecine d’Abidjan was established and set about training a new generation of African physicians. The faculty, and the new hospitals that were built, were almost exclusively run by French coopérants, technical staff paid by the French government to assist in the administration of the newly independent colony. Many had been in the former colonial service and, as during the colonial period, health care workers were almost all military personnel. Since tropical medicine was taught in military academies, even civilian health care workers were imbued with military discipline and its hierarchical culture (Domergues 1986). This helped to foster a conservative medical culture that was, and remains, heavily biased toward curative interventions and a hierarchical teaching and management style. Côte d’Ivoire’s president from the country’s independence in 1961 until his death in 1993, Félix Houphouët-Boigny, himself a physician, took a direct interest  in the medical school. Government health policy expressed a modernist option in its preference for technology-intensive curative

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biomedicine over less infrastructure-intensive health care delivery that could have reached more individuals for less cost. This reflected a widespread confidence in biomedicine throughout the postcolonial world in the 1960s. At the time, the new nation-states were still flushed with the optimistic projects of nation building and biomedicine was entering the golden age of therapeutic progress, establishing a powerful link between medicine and nationalism2. For postcolonial Côte d’Ivoire, investing in modern health care made eminent sense for two reasons. First, health care would translate into better health for the population and therefore improve its economic productivity – a belief that recapitulated colonial arguments for investing in health after the First World War. Second, the health care sector would be a motor of employment able to absorb the newly minted technocrats, technicians, and medical specialists that the educational system – itself weighted toward higher education – was producing (Joshi, Lubell and Mouly 1976). This was to have lasting consequences on the therapeutic economy of Abidjan. Access to health care was a clearly expressed political demand on the part of Africans. After the Second World War and the Brazzaville conference where Charles de Gaulle granted limited self-government to the colonies, African deputies were elected to the French National Assembly. As a result of their newly found political influence, the Lamine Gueye law of 1950 recognized French African colonial citizens’ rights to treatment as equal to that of citizens living in Metropolitan France. This included a provision stipulating access to health care for all colonial citizens. Unlike many other African countries, the presence of an industrial base in Côte d’Ivoire afforded a significant number of African workers access to biomedicine through the workplace from the postwar period. Independence from France in 1960 did not change health policy. As in most other areas, the juridical framework governing health care remained in place, guaranteeing in principle equality of access to health care. This ideological commitment to biomedicine was perhaps best illustrated by the Ivoirian government’s decision to extend free health care – including pharmaceuticals – to all its employees. The centralization of biomedical infrastructure, political power, and the resources to access biomedicine in Abidjan laid the foundation for a lasting biomedical hegemony in the city and its hinterland. In case of illness, resort to biomedicine became the norm. As a result, the most modern forms of biomedicine were sought out – notably,

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hospitalization, tertiary care, and patented medicines. For example, in the 1990s Côte d’Ivoire was the largest market for patented pharmaceuticals in sub-Saharan Africa, excepting South Africa – larger than Nigeria, for instance, which has almost ten times the population and which produces its own medicines (Duranson 1994). In the political space of health, biomedicine was the modernist corollary of the grandiose urban planning of the postcolonial period. Like the modernization program, however, health care policy was compromised by economic developments.

E a r ly A t t e m p t s at Rei gni ng i n H e a lt h C a r e C o s t s : the 1970s It became clear early on after independence that the policy of aggressive medical modernization would not be sustainable. Health care costs were outpacing both inflation and the growth of the state’s budget. As a result, the government sought to decrease health expenditures starting in 1970, a few years after it had slowed down investments in the education sector and fully eight years before the World Health Organization (WH O) advocated the shift to primary health care at the Alma Ata Conference. However, “rationalizing” the public health care system – finding more efficient ways to deliver more effective health care – proved difficult. By 1970, the health care system was a juggernaut. The highly visible infrastructure that had already been built was largely in Abidjan. The city was home to one eighth of the population but had half the physicians, one third of the nurses, and almost two thirds of the midwives in the countryside (Joshi 1976). The segments of the population with access to health care were those to whom the government was the most politically exposed: civil servants – including, of course, those who enacted health care policies – and the residents of the capital city, where the potential for civil unrest could be the most disruptive as shown by the sans-travail (without work) demonstrations of 1969 (Cohen 1972, 1974). This made it difficult to implement policy reorientations that would favour rural primary care or even health care directed at improving access for the poor in urban areas, as the context of cutbacks meant that the current beneficiaries of the health care system would suffer. In addition, the entitlements of current employees in the system meant that a large part of the health budget was already spoken for.

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Moreover, the future generations of health care professionals being churned out by the Faculty of Medicine presented a potential political problem, as these students expected that the health care system would continue to offer employment opportunities. Substantial health care cuts were implemented nonetheless, and the share of the state budget devoted to health went from 10.6 per cent in 1970 to 7.5 per cent in 1985 and dropped further to seven per cent in 1988 (World Bank 1996). Not surprisingly, cuts were implemented slowly and it was the established constituencies of the medical system – the urban middle classes and those already employed in the public health system – that were the most shielded. But one result of the early scaling back of state investments in health care did affect everyone: the termination of free medicines. This resulted in the country’s first private insurance scheme, the Mutuelle générale des fonctionnaires, which covered medication costs for the state’s fonctionnaires (civil servants) and served as a model for subsequent health insurance programs in the country.

T h e E c o n o m ic C r is is a nd the Collaps e o f P u b l ic H e a lt h: the 1980s While state retrenchment in the health care sector began before the crisis of 1979, the public health care system in Côte d’Ivoire essentially collapsed in the 1980s with the implementation of structural adjustment measures. Investment in the public health care sector declined dramatically, as expressed in per cent of G D P invested in health. This was compounded by a decline in G D P during this period. Cost recovery measures (in other words user fees) were implemented at the behest of the World Bank in an attempt to generate revenue for the system and to improve services, the assumption being that paying users would demand better accountability. The result was that the public was asked to spend money on health care that had until then been free, while both the quality of that health care and the financial resources available to individuals declined dramatically. Services did not improve appreciably, and later studies showed that much of the fees collected either went back to the central administration or were stolen, betraying the original intention of cost recovery (World Bank 1996).

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In addition to the imposition of user fees, liberalization of the health sector was proposed by the World Bank as a measure to remedy the declining capacity of the public health care system. Introduction of user fees and privatization of health services were implemented slowly, suggesting some resistance on the part of the Ivoirian government. Privatization of the health sector was introduced in the early 1980s; significantly, this allowed the opening of private pharmacies and dispensaries. Prior to that, only two private clinics had been authorized to operate. The pressure to liberalize health care did not only come from the World Bank but also from the medical establishment. In the early 1980s, the medical establishment was well aware that the hospitalcentric bias of the health care system and the gradual imposition of user fees were generating significant barriers to access, particularly for the poor populations that lived in the sprawling townships further and further away from the hospitals. Liberalization – allowing physicians to open private offices and charge what the market would bear – was believed to be the solution. As a former dean of the medical school explained to me, the idea was that young physicians would set up offices in the city’s outlying townships and would still be able to make a good living because lower consultation fees would be made up for by higher patient volumes. A number of clinics were set up with state help. However, the plan failed to achieve its objectives. Physicians did not want to work in the townships. The reasons were partly economic and partly inherent to the élitist culture of biomedicine in Abidjan. Even younger physicians perceived that their pay would be better if they stayed in the central districts of the city and competed for the wealthier clientele to be found there. One senior official, who had no love lost for doctors, told me that Ivoirian physicians do not want to soigner du Mamadou – treat Mamadous – a derogatory term for poor Muslims from the North and from Burkina Faso. Many physicians expressed their frustration with working with a poor clientele. After all, they told me, as physicians they were “intellectuals” trained in the most modern medicine and not “social workers.” These patients, they explained, often did not understand, did not follow instructions, and did not come back for follow-up.3 By the 1990s, what was left of the Ivoirian state’s attempt to build a modern health care system in a precarious economic context was

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an empty shell. However, against the backdrop of a crumbling public health infrastructure, biomedicine still exercises a hegemonic influence on health care and therapeutic resort to this day. The elitist culture of biomedicine has been compounded by increased inequality in access to health care. The legacy of these changes in the contemporary therapeutic economy is explored next.

T he T h e r a p e u t ic E c o n o my i n the Late 1990s Medical pluralism is the norm in urban areas throughout the world, and Abidjan is no exception. The predominance of resort to biomedicine – by far the most expensive form of treatment available – is striking for an African city where poverty remains widespread. As defined at the outset of this essay, the term therapeutic economy designates the totality of therapeutic options in a given location and the strategies used to access them. This has the benefit of emphasizing the transactional nature that constrains and directs sufferers’ patterns of  resort. That is, therapy always involves some kind of exchange, whether monetary or in other forms of personal debt. A therapeutic economy comprises diverse medical traditions that may each be divided up into sectors representing subspecializations of professionals and / or points of access. Biomedicine, for example, is a medical tradition that comprises a hospital sector, pharmacies, injectionists, midwives, etc. Table 1 summarizes my ethnographic data on the most common offerings available in Abidjan’s therapeutic marketplace. With the exception of Traditional Chinese Medicine (T CM) and various healing churches, none of the nonbiomedical systems is differentiated into sectors. Traditional Chinese Medicines, however, were sold in marketplaces, in T C M pharmacies, and even in a few small TC M hospitals. Healing churches most commonly are storefront prayer halls, but larger churches that have therapeutic communities are usually located outside the city (see, for instance, Piault 1975). Public Health Care The legacy of the postcolonial expansion of modernist health care was a striking one that persists despite the ensuing cutbacks. The earlier emphasis on specialized tertiary care remains clearly visible. Two of the city’s three hospitals – in Yopougon and Cocody – are

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Table 1 Organization of the therapeutic economy in Abidjan Biomedical Formal (state-regulated) Public

Informal (non state-regulated) Private

Non-profit Hospitals Dispensaries Maternities

Nonbiomedical

NGOs Mission hospitals

For-profit Private clinics Pharmacies

Infirmaries Injectionists Lay pharmacies

Traditional Chinese Medicine African herbalists Ayurveda Healing churches Psychotherapy circles Islamic healers Witchcraft specialists

imposing modern complexes built by the French. The Yopougon University Hospital was the last built, in the late 1980s. Even before it opened, most of the equipment the French had installed had been stolen. The Cocody University Hospital, next to the Faculty of Medicine, suffered a similar fate but was rebuilt with Japanese aid in the late 1990s. The older Treichville University Hospital – the former Infectious Diseases Hospital – sprawls over a large campus and is similarly decrepit. Most of the beds in the Infectious Diseases wing were closed through the late 1990s because there was no money to fix the roof, which leaked whenever it rained. Despite being dilapidated and staffed by overworked and at times hostile personnel, public health care facilities charged consultation fees that were beyond the reach of most Abidjanais. There was no public health insurance. The lack of insurance and the expense of a single consultation constitute a significant barrier to regular use by the average Abidjanais, but did not stop pharmaceuticals being bought by patients, who simply bypassed the public health care system in order to cut costs. Although 91 per cent of consultations occurred in the public health sector, biomedical consultations represent a minority of the means by which patients obtain pharmaceutical drugs, as can be shown by the tiny expenditures on consultation fees relative to pharmaceuticals in Table 2. This demonstrated a striking economic rationality, whereby the poor dedicated scarce resources to purchase biomedicines.

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Table 2 Household expenditures for health in 1995 Very poor 144,800

1,440

3,708

15,255

260

432

2,024

87

199

1,547

113

103

384

Hospitalization

0

360

2,209

Consultation with healer

0

34

381

89

329

845

3

54

860

74

213

6,637

2,057

5,412

28,503

Monthly household income Pharmaceuticals Traditional medicines Consultation fees Preventive consultation

Other healer costs Transport Subsistence Total medical expenses Source: World Bank 1996, 61.

Primary care facilities are few and far between. The city’s two largest townships are Abobo and Yopougon, each with a population estimated between one and two million. There is no public hospital in Abobo, and only two public maternity and six vaccination centres in Yopougon. These facilities were poorly equipped. Frequent shortages of sterile gloves were the norm; midwives delivered babies barehanded, and most maternity units did not have a blood pressure cuff. Staff were overworked and burnt out. I interviewed one obstetriciangynaecologist, a South African woman who had pursued her medical studies in the Soviet Union after she was exiled because of her involvement with the African National Congress. She told me that she left the hospital to work in public health policy because one day she found herself yelling at a woman who had come in, late, with obstructed labour. “You know,” she told me, “that’s when I realized I couldn’t do this anymore. I was so frustrated, so angry, that I was yelling at these poor patients.” The dire situation of the public health system, she felt, compromised her political ideals about access to health care.

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Private Health Care In the late 1990s, the poor could not afford the public system, and the wealthy could pay for better care. As a result, in the city, the private biomedical system did a brisk business. Private cliniques abounded. These were small hospitals with basic outpatient and inpatient services. The larger ones had a fuller range of services available including radiology and even CT scanners. They were run on a for-profit basis and competed aggressively with each other for paying patients. Although they were required to have a license to operate, they were essentially unregulated. By law, private companies had been obliged, since the colonial period, to furnish occupational health services to their workers. Companies complied by offering some preventive health services to their workers: a medical exam when they were hired followed by periodic health exams. This was the strict minimum and was usually dispensed through an on-site médecine du travail (occupational health) department. The philosophy behind médecine du travail was a legacy from colonial times when biomedicine was seen as an important management tool for maintaining a productive African labour force. Biomedicine played an increasingly important role through decolonization in managing industrial relations. In colonial times, French staff had health insurance and access to the colonial health service (Domergues 1986). With independence, this translated into health insurance that was extended to African executives and, gradually, office workers, and even foremen4. By doing this, the private sector followed the lead of the public sector that, as described above, entitled its workers to modern health care. The Informal Biomedical Economy The tension between individualized health-seeking behaviour and patterns of resort constrained by kinship relations was visible in the informal biomedical economy. By the time the health care sector was liberalized, consumption of patented medicines was firmly established as part of the pattern of resort of Abidjanais. Pharmaceutical brand names were aggressively marketed on billboards and pharmacy windows throughout the city, often displaying healthy, middleclass Africans in settings that looked more European than African. They resembled advertisements for toothpaste or bouillon cubes.

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This undoubtedly contributed to Côte d’Ivoire’s leading national market share for pharmaceuticals in sub-Saharan Africa. Brand-name pharmaceuticals were important social signifiers – they signalled modernity but, more significantly, status. In a country where illness was common, expensive medicines were among the cheapest status symbols. Few could afford a car, but everyone could afford cigarettes and even some nice clothes. Medicines were in a price range that allowed even the poor to signal that they were not destitute, that they were able to take good care of themselves. Unlike jeans or sunglasses, there were few pharmaceutical knockoffs because the generics market was still small, although this was increasing, and counterfeit drugs had emerged as a significant problem. The impact of pharmaceutical consumption practices was acutely felt by the third party payer agencies that had to reimburse the cost of medicines. As one manager told me, “When Madame alights from the bus with her little pharmacy bag, the whole neighbourhood gets talking.” With liberalization, licensed pharmacies proliferated across the city – more than 150 were counted in 1994 (Duranson 1994). In poorer neighbourhoods, pharmacies are often the only “modern” businesses, located in imposing buildings that quickly become local landmarks. The absence of physicians created a niche for dispensaries, but these were few and far between. As a result, unregulated infirmaries and drug sellers also proliferated, leading to a significant informal market in pharmaceuticals and biomedical interventions. While a significant minority of Abidjanais had access to private biomedical care, most care-seeking occurred in the informal sector. This included resort to traditional healers and other medical traditions as well as ad hoc consumption of pharmaceuticals. Partial adherence to prescribed drugs was common for economic reasons, as was the practice of obtaining drugs from pharmacies usually through untrained assistants, or obtaining drugs from resellers who sold biomedicines in the street or in markets. However, biomedicine remained the dominant medical system, even in the informal sector, indicating the cultural power therapeutic modernism exerted. The three major elements of the informal biomedical economy were infirmaries, injectionists, and unregulated lay pharmacists. Private infirmaries proliferated after the economic crisis and became a fixture in Abidjan’s sprawling townships. They were unregulated, and although most were staffed by qualified nurses (who set up their own businesses to gain extra income) it was not unusual to find such infirmaries staffed by nursing aides or even individuals with no formal health qualifications; many Abidjanais could not tell the difference

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and assumed that any kind of care was better than none at all. Consultation fees were a fraction of what they were in the formal sector – the average was 500 CFA (roughly USD 1) compared to 2,000 to 10,000 CFA in the formal sector. In addition to providing prescriptions, infirmaries also performed basic nursing acts such as stitching wounds, setting up drips, and giving injections. Injectionists were used by patients to administer intravenous medicines that were purchased at local pharmacies. The most common injections with which people self-medicated were quinine for malaria and various antibiotics. For the majority of Ivoirians, the absence of health insurance meant that when they became ill they had to find the money to pay for medicines – usually by appealing to relatives for help. How much money they were able to mobilize from these kin networks depended on a complex entanglement of factors: their social position within the family, the assiduity with which social relations had been cultivated, and the influence wielded by their advocates within their family. “African solidarity,” as my informants called these kin-derived forms of solidarity, meant that it was difficult for family members to refuse without fearing a dangerous degradation of their reputation that could be dangerous should they ever find themselves in a position of need. African solidarity was occasionally exploited for financial gain when individuals used prescriptions to raise money but did not purchase all the medicines prescribed. The picture was that of a profoundly irrational modernist health care sector. Public health had been hollowed out and gleaming hospitals stood empty. Basic primary care was in shambles, and consultation fees in the public hospitals where the infrastructure was poor rivalled those of the private sector. Meanwhile, an intensely competitive private market had emerged. The commodification of biomedicine resulted in complicated entanglements with local, kinship-derived forms of therapeutic solidarity. The impact of biomedical hegemony and of the hybridization of biomedicine with African solidarity was just as visible in the nonbiomedical sectors of the informal health economy.

T h e r a p e u t ic M o derni ty and T h e r a p e u t ic Moderni sm Just as we may speak of a social modernity, characterized by efficient institutions and individualization, we can also speak of a “therapeutic modernity,” characterized by the rational organization of biomedicine, individualized patterns of resort, and socially guaranteed access to health care. In the absence of such a therapeutic modernity, what drives

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the resort to biomedicine? The reasons are both historical and pragmatic. Biomedicine is most visibly effective for acute illnesses where the consequences can be dramatic – as is the case with infectious diseases, such as malaria, that are potentially fatal if untreated – or the disability evident for years after, as in orthopaedic and ophthalmologic conditions. These happen to be illnesses whose burden is disproportionately borne by developing countries. As a result, the high value placed on biomedicine in these countries is entirely sensible. Yet it is in these countries that biomedicine is by far the most expensive form of therapy available. A common consequence of this is that biomedicine is often the therapy of last resort, consulted only when cheaper alternatives have been exhausted. This delayed pattern of resort means that patients come to biomedical practitioners sicker and more difficult to treat – and that biomedicine is less likely to succeed. Not surprisingly, biomedicine’s efficacy is often attributed to the more visible elements that distinguish it from traditional medical practices. Often, these elements are not those that are therapeutically active from a biomedical perspective. For example, the widely held preference for injections over tablets stems from the fact that many medicines were initially only available as injectables and that injectables are still often preferred for patients who are too ill to take tablets. For these sick patients, therapeutic success is more dramatic than in less sick patients who can be treated with tablets. Thus, injections are credited with achieving the surplus therapeutic effect observed over tablets even though they are biologically inert. It is of course not only needles that signify biomedicine’s modernity: the reliance on imaging machines, written reports, even the uniforms – crisp white coats – are all markers of the new therapeutic order that biomedicine promises.5 The high demand for biomedical treatments means that, even in poor countries, large sums of money are spent on them. Even though individuals may be poor, they are able to mobilize significant amounts of capital through kinship networks and other traditional forms of solidarity. Poverty is thus not a disincentive to the temptation to charge as much as the market will bear while at the same time cutting corners, which is inevitable in a liberalized therapeutic economy characterized by competing medical systems and a lack of regulation. As a result, needles may be reused, inappropriate medicines prescribed by untrained practitioners, and suboptimal doses ingested. These practices share a signifying logic, conserving the symbolic

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aspect of therapeutic practice while sacrificing the more expensive active ingredient either by substituting or diluting the active ingredient. This is not to deny that some symbols or symbolic practices can have some efficacy; such phenomena are widely acknowledged under the label of the placebo effect. Highlighting this symbolic explanation for therapeutic practice is intended to explain why certain modernappearing practices may be preferred over more traditional ones, even in the absence of any evidence of improved therapeutic efficacy. This application of a modernist aesthetic to therapy contrasts with individualized calculations of means-to-ends, such as those in nations with a robust public health system, characteristic of therapeutic modernity. I therefore refer to this aesthetic of therapy as “therapeutic modernism.” It arose under conditions of depleted modernity, where citizenship did not ensure health, or where there were no medicines available in the public hospital and the ill were too poor to afford them in the private sector.

T h e r a p e u t ic M o d e r ni sm, Epi demi cs, a n d L o c a l B iologi es The modernist aesthetic of Abidjan’s therapeutic economy points to the cultural valence of biomedicine – its ability to signify a desired modernity and organize social and therapeutic relations in a way that is self-consciously modernist: individualized and intent on marking a difference from what is taken to be traditional. Biomedicine’s cultural hegemony over Abidjan’s therapeutic economy, born of the historical trajectory of postindependence nationalism, is reflected in the borrowing of biomedical symbols in traditional medicine and local churches. This echoes the modernization of traditional medicine in such places as Tanzania and South Africa (Langwick 2007). However, the country’s health system, hollowed out by the economic crisis and structural adjustment, was not able to deliver the social institutions that make biomedicine accessible and affordable and therefore effective. In the place of therapeutic modernity was therapeutic modernism – an aesthetic of healing practice that permeated the city’s therapeutic economy. For the bulk of conditions that afflicted city dwellers, this creative therapeutic bricolage was unable to meet expectations. Indeed, medical pluralism and hybridization, as well as parallel and serial patterns of resort, are common worldwide. But, when unmoored from

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the anchor of bureaucratically rational institutions, the unbridled use of biomedicine can have unintended effects. This has attracted increasing attention in the era of emerging infections, such as AIDS, but also multidrug-resistant tuberculosis and Ebola, which are in fact spread by inadequately managed health facilities or poorly supervised health programs. The culture of biomedicine is increasingly globalized, suggesting that attention should be paid to these unintended effects rather than viewing traditional culture as an impediment to public health. The cultural appropriateness of public health interventions needs to refer not only to traditional constructions of health and illness but also to the way these have hybridized with increasingly globalized biomedical technologies and representations. Indeed, the modernist culture of therapy suggests some leads in the mystery of why Abidjan became the epicentre of the HIV epidemic in West Africa. The city’s modernist culture and the emergence there of a sexual modernity have been implicated in making sexuality increasingly permeable to economic relations in the postcolonial era. After the oil shock of the 1970s caused a global recession that depressed Côte d’Ivoire’s primary exports, the economy collapsed. Inequality within and across social worlds grew. The poor (mainly women) increasingly relied on those wealthier (mainly men) to get by. Social relations changed and broadened sexual networks. Increased likelihood of sex across, rather than within, social groups, made it easier for HIV to be transmitted beyond discrete social groups and helped spread the epidemic (Nguyen 2005). This explanation echoes two decades of anthropological research on AIDS and sexuality that have called for more nuanced epidemiological quantifications of behaviour – calls which appear to have been vindicated by the finding that differences in sexual behaviour do not wholly account for differences in epidemics (Thornton 2008). The other piece of the puzzle lies in the therapeutic modernism of the city that has been discussed above. Specifically, I refer to the emergence of a vast informal economy in biomedicines in a context where resort to biomedicine is the norm. The contribution of therapeutic modernism to the spread of HIV is, first of all, suggested by timing. The rise of the informal biomedical economy is coincident with the years where the HIV epidemic exploded in Abidjan6. Therapeutic modernism may have contributed to the spread of HIV through two pathways: irrational biomedical treatment of sexually transmitted infections and reuse of needles. This highlights the power of

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biomedicine, even in partial aesthetic forms, to change biology with dramatic consequences. These pathways, and the evidence incriminating them, are explored next.

Ir r at io n a l B io medi ci ne Throughout the 1980s, the growing inaccessibility of public health facilities led to increasing resort to the informal economy for the treatment of symptoms due to sexually transmitted infections (STIs). Antibiotics, purchased either directly – without a prescription – from pharmacies or from street and market resellers, led to the undertreatment of STIs. Undertreatment has two significant consequences. First, while it often relieves symptoms – such as burning on urination or discharge – it does not eradicate the infection, which persists in a chronic form. In the absence of symptoms, people may think they are cured and engage in sex even though they still harbour an STI, which they can then transmit to others. This is particularly relevant to HIV transmission, as STIs greatly increase the risk of HIV transmission. This can have significant consequences at the population level. Differences in the prevalence of STIs lead to substantial differences in HIV prevalence in populations. Secondly, undertreatment of STIs often results in organisms that are resistant to the antibiotics used. These resistant bacteria can then be retransmitted, making it more likely that subsequent infections will persist in chronic form because the antibiotics used will not work, although they may still remove the symptoms. In Abidjan, Professor Mireille Dosso, microbiologist and director of the Institut Pasteur of the Cocody Hospital, told me that although they saw several cases a day throughout the 1970s, “we stopped seeing acute sexually transmitted infections in the 1980s.” Dosso’s observation was confirmed by other clinicians I interviewed. All attributed this to patients not wanting to pay consultation fees and, therefore, buying antibiotics off the street or over the counter from the new pharmacies that had sprung up all over the city during this period. This was supported by unpublished data that shows a quasidisappearance of congenital syphilis in the 1980s, suggesting widespread use of penicillin. Dosso told me once of going to pick up some medicines at her local pharmacy and overhearing a client next to her say, “Excuse me, could I have more of that stuff you gave me last week; it’s dripping again.” This suggests that the irrational

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use of antibiotics, fuelled by the privatization of health services and the proliferation of an informal biomedical economy, by decreasing the prevalence of symptomatic STIs may actually have led to an increase in STIs as these were now asymptomatic and more likely to be transmitted. Were chronic, asymptomatic sexually transmitted infections prevalent? While no specific studies addressing this problem were conducted, some indication can be gleaned from a perusal of theses at the Faculty of Medicine of Abidjan. Significantly, several studies described extraordinarily high rates of sexually transmitted infections in patients consulting for infertility. In other words, these are patients whose only symptom of having an S T I is infertility. These studies are summarized in Table 3. The epidemiological shift from acute to chronic sexually transmitted infections could be expected to have had a significant impact on fertility, based on numerous historical studies that have documented the demographic impact of epidemics of sexually transmitted infections. It would also have had a significant impact on H I V transmission, particularly since asymptomatic S T I sufferers would not have had any signal that anything was wrong and would, as a result, not have been likely to modify their sexual behaviour. Evidence for or against the hypothesis that under-treatment of STIs contributed to the spread of the epidemic remains patchy as no epidemiological studies have been designed or carried out to test this hypothesis. Prostitution and migration are widely believed to have triggered the epidemic in Abidjan. The potential for reused needles to spread and amplify HIV epidemics is well known and has emerged as one hypothesis for the origins of the epidemic (see, for example, Gisselquist et al. 2003). Could the proportions of the Abidjan epidemic be explained by reuse of needles? This is certainly plausible, as the growth of for-profit neighbourhood dispensaries and injectionists mushroomed throughout the 1980s. This was fuelled by decreased access to health care, as has already been discussed, but also by the growing number of health care professionals who were unable to find employment in the public sector which, with structural adjustment, was no longer hiring new staff. These cohorts of health care workers had no choice but to go into private practice and, in the fierce competition for patients, cut corners to earn a living.

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Table 3 Rates of sexually transmitted infections in patients consulting for infertility Author

Year

Study population

Diagnosis

Baroud

1984

258 men consulting for infertility

history of past urethritis

90%

Badreddinne 1994

34 men found to have oligoasthenospermia

leucospermia bacteria in sperm

88% 52%

Kouoh

67 men consulting for infertility

history of past STI STI by microscopy by culture

79% 66% 58%

1995

Rate reported

Although no one was willing to go on record (for obvious reasons), interviews that I conducted in 1999 with health care professionals and staff indicated that through the 1980s reuse of needles was common throughout these dispensaries and even in public hospitals. The hypothesis has never been seriously examined by epidemiologists in Abidjan, although clinicians I spoke to gave it credence. They pointed out, however, that they think most of the current cases of HIV are due to sexual transmission. A small epidemic of reused needle-spread H I V might have been enough to trigger a wider, sexually transmitted epidemic. An intriguing study, conducted in 1995, measured seroprevalence for Hepatitis C amongst patients suffering from sickle cell disease who were treated at the Immunology and Haematology Service of the Cocody Hospital. Patients with sickle cell anaemia often receive transfusions, and Hepatitis C is a blood borne disease largely spread through shared needles and transfusions – sexual transmission is much rarer. As a result, the study was carried out to determine the rate of Hepatitis C virus (H C V ) infection in this population. As shown in Table 4, the author found no difference in the rate of H CV between transfused and nontransfused patients. However, of the five H C V-positive patients who were never transfused, four had a history of having received injection treatments while only one reported never having received injections. As H I V is only very rarely acquired through sexual transmission, this suggests that HC V was being transmitted by unsafe injection practices, supporting the hypothesis that these practices could have spread H I V .

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Table 4 Prevalence of Hepatitis C in sickle cell patients hcv+

Transfused n=101 Never transfused n=50

hcv–

11

90

5

40

D is c u s s i on In Côte d’Ivoire, biomedicine has been at the heart of the project to construct a modern nation. Since colonial times, biomedicine has been a powerful cultural vector used alternately to evangelize colonized peoples, or to produce a docile work force. Thus, biomedical hegemony over patterns of resort has its roots in colonial biomedicine as well as in the postcolonial project of building a modern health care system. As Margaret Lock and I (Lock and Nguyen 2010) have argued, biomedicine has always been in some form a global project because of its pretensions to a universal biology and its practical and epistemological embeddedness in the colonial project. The cultural hegemony of biomedicine over therapeutic practice in Côte d’Ivoire was not exceptional. As Lock had also found in urban Japan, what was unusual, certainly for a sub-Saharan country, was the extent to which biomedicine was able to achieve hegemony over the therapeutic cultures of the city within a hybridized and vigorous medical pluralism. This draws attention to the power of biomedicine as signifying practice and sheds new light on how the culture of biomedicine may be diffused even in the absence of a functional biomedical health system. The therapeutic economy in Abidjan, like its urban cultures, is not so much modern as modernist. That is, although modern medicine (biomedicine) is dominant – whether in market share, financial turnover, consumption practices, or therapeutic itineraries – it is not embedded in a network of institutions that regulate its use and ensure its effectiveness and, therefore, make it rational and a way of getting from means to ends. Therapeutic modernism continues to shape patterns of resort and an unregulated consumption of biomedicines. Borrowing on the distinction made between modernism and modernity, the aesthetic of biomedicine largely present in Abidjan (with its emphasis on the ability to intervene on misfortune

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through the body, and the commodity-form of healing, as well as in the symbolic borrowings visible in local healing churches) can be contrasted with the social rationality of biomedicine (with its focus on manageable populations, a legible biological body, and health insurance). This is not a comment on the rationality of individuals: an aesthetic use of biomedicine may be perfectly rational in many circumstances. This consideration of the local therapeutic economy highlights the individualizing force of biomedicine. The commodityform of pharmaceuticals in effect individualizes therapy management, dissolving previous collective forms of therapy seeking. This therapeutic modernism furnishes the cultural context from which an epidemic of under-treated sexually transmitted infections and unsafe injections in the informal health care sector could emerge – an insight that draws on Lock’s notion of a local biology. Significantly, both would explain why Abidjan emerged as the epicentre of the epidemic in West Africa. They raise the question of whether therapeutic modernism magnifies the ability of social relations to influence biology, as in when social inequalities translate into a differentiated ability to intervene on one’s own biology. The dissemination of biomedical technologies (injections and pharmaceuticals) and representations (modernist ideas of individual health through consumption) intensifies the ability to intervene on human biology. Although unwittingly, this has made the body more permeable to social relations, specifically through the forces and struggles that condition the availability of biomedicine. Fate reveals itself in increasingly biological terms – particularly when modernist aspirations to health and life are articulated despite, and even because of, the absence of a functioning public health apparatus.

not e s 1 The notion of a “moral economy” draws on Thompson 1971. Thompson shows how capitalist markets brought into conflict different régimes of value. I use the term here in a somewhat broader sense, to draw attention to how different social relations produce value. 2 In some nations this link was forged not with biomedicine but with traditional medicines, as in the case of China. 3 Interestingly, the difficulties and frustrations of working with the poor did not come up nearly as frequently in interviews I conducted with physicians

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trained and working in Burkina Faso, a much poorer country whose medical school’s first graduating class was in 1990. 4 The systematic reference to a quadripartite division of the workforce into cadres, employés, agents de maîtrise, and ouvriers – executives, office workers, technical supervisors or foremen, and labourers – is another colonial heritage. 5 This is attested to by an extensive literature on healing cults in Africa that emphasizes the reliance on such symbolic expressions of biomedical power, for example Willis 1968. 6 H I V became the leading cause of death of young men in 1989 (De Cock et al. 1991).

R e f e r e nce s Appadurai, A. 1986. “Introduction: Commodities and the Politics of Value.” In The Social Life of Things, edited by A. Appadurai, 3–63. Cambridge: Cambridge University Press. Augé, M. and C. Herzlich, eds. 1984. Le Sens du Mal. Paris: Éditions des Archives Contemporaines. Cohen, M.A. 1972. “The Sans-Travail Demonstrations: The Politics of Frustration in the Ivory Coast.” Manpower and Unemployment Research in Africa 5(1): 22–5. – 1974. Urban Policy and Political Conflict in the Ivory Coast. Chicago: University of Chicago Press. De Cock, K.M., B. Barrere, L. Diaby, M.F. Lafontaine, E. Gnaore, A. Porter, G.C. Lafontant, A. Dago-Akribi, M. Ette. 1990. “A IDS: The Leading Cause of Adult Death in the West African City of Abidjan, Ivory Coast.” Science 249(4970): 793–6. De Cock, K.M., B. Barrere, M.F. Lafontaine, L. Diaby, E. Gnaore, D. Pantobe, and K. Odehouri. 1991. “Mortality trends in Abidjan, Côte d’Ivoire.” a i d s 5(4): 393–8. De Cock, K.M., A. Porter, K. Odehouri, B. Barrere, J. Moreau, L. Diaby, J.C. Kouadio, W.L. Heyward. 1989. “Rapid Emergence of A IDS in Abidjan, Ivory Coast.” Lancet 2 (8660): 408–11. Domergue-Cloarec, D. 1986. Politique coloniale française et réalités coloniales : La santé en Côte d’Ivoire (1905–1958). Toulouse: Association des Publications de l’Université de Toulouse-Le Mirail. Duranson, S. 1994. Impact de la dévaluation du franc c fa sur la filière médicament en Côte-d’Ivoire. Abidjan: Centre Orstom Petit Bassam. Fassin, D. 1996. L’espace politique de la santé: essai de généalogie. Paris: PUF.

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Feierman, S. and J.M. Janzen eds. 1992. The Social Basis of Health and Healing in Africa. Berkeley: University of California Press. Gisselquist, D., J. Potterat, S. Brody, F. Vachon. 2003. “Let it be Sexual: How Health Care Transmission of AI D S in Africa was Ignored.” International Journal of s t d and a i d s 14:148–61. Iliffe, J. 2006. The African a i d s Epidemic: A History. Athens: Ohio University Press. Janzen, J.M. 1978. The Quest for Therapy. Berkeley: University of California Press. Joshi, H., H. Lubell, and J. Mouly. 1976. Abidjan: Urban Development and Employment in the Ivory Coast. Geneva: International Labour Office. Loba, K.B. 1995. “Contribution à l’étude de la prévalence de l’hépatite virale C dans la population drépanocytaire: à propos de 151 cas colligés dans le service d’Immuno-hématologie du C HU de Cocody.” Thèse de médecine, Faculté de médecine d’Abidjan. Langwick, S. 2007. “Devils, Parasites, and Fierce Needles: Healing and the Politics of Translation in Southern Tanzania.” Science, Technology and Human Values 32:88–117. Lock, M. 1980. East Asia Medicine in Urban Japan: Varieties of Medical Experience. Berkeley: University of California Press. – 1993. Encounters with Aging: Mythologies of Menopause in Japan and North America. Berkeley: University of California Press. – and V.-K. Nguyen. 2010. An Anthropology of Biomedicine. London: Wiley-Blackwell. Nguyen, V.-K. 2005. “Uses and Pleasures.” In Sex in Development: Science, Sexuality and Morality in Global Perspective, edited by S.L. Pigg and V. Adams, 245–68. Durham: Duke University Press. Piault, C. 1975. Prophétisme et thérapeutique: Albert Atcho et la communauté de Bregbo. Paris: Hermann. Thompson, E.P. 1971. “The Moral Economy of the English Crowd in the 18th Century.” Past & Present 50: 76–136. Thornton, R. 2008. Unimagined Community: Sex, Networks, and a i d s in Uganda and South Africa. Berkeley: University of California Press. Willis, R.G. 1968. “The Kamcape movement.” In Witchcraft and Sorcery, edited by M. Marwick, 218–30. Harmondsworth: Penguin Books. World Bank. 1996. Poverty in Côte d’Ivoire: A Framework for Action. Washington: World Bank, Human Development III / Africa Region (confidential report number 15640–I V C ).

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3 Rational Sex at the Margins of the State: Sex Work, Violence, and HIV Prevention in Papua, Indonesia Leslie Butt

Indonesia’s military urged troops in Papua not to have sex with prostitutes after announcing that 48 soldiers had contracted HIV /A IDS, 12 of whom died, state news agency Antara reported Tuesday … “Soldiers are becoming infected with AI DS and this has come to the commander’s attention,” Antara quoted Maj. Situmorang, a spokesman for the military command in Papua, as saying. “The soldiers should not have sex with prostitutes.” Antara 2005 Indonesian soldier to indigenous teenage girl: “If you don’t want to have sex with me, and try and run away, I’ll shoot you.” Melina, occasional street sex worker, age 14

Gaps between global ideals of HIV/AIDS prevention and the reality of local initiatives have been widely noted. Globally sanctioned interventions such as promoting rational decision making around sex, and the ABC model (Abstinence, Be faithful, and use Condoms), draw from behaviour models that regard sexual behaviour as risky when it deviates from narrowly defined norms. Assumptions about reasoned sexual practice are rooted in conceptions of human behaviour that assume individuals can and do routinely assess risks from a narrow rationalistic point of view, and modify their behaviour accordingly. When rational sex is put into practice, cracks show up almost

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immediately, from the practical impossibility of the ABC model, through to unwilling HIV/AIDS educators who themselves are afraid of condoms. The evidence that communities establish their own stance on HIV/AIDS is compelling; further, this is a mediated process in which the languages of HIV/AIDS and culture intersect to produce something new and unique (Eves and Butt 2008, 4; Pigg 2002; Stillwagon 2006). Evidence is also compelling that no matter how fallible these global models, they are nonetheless powerful, and can strongly shape outcomes in ways perhaps not intended. When agencies can decree and impose expectations of rational sexual practice on individuals, those who display alternate practices can be labelled, contained, and ultimately regulated. What the political power of global HIV/AIDS models means most obviously in the provinces of Papua and West Papua,1 Indonesia confirms repeated commentary by a score of observers about hierarchies which align along the lines of race. The province of Papua was incorporated into Indonesia in 1969 in a contested takeover. It has been the site of long-standing resistance by indigenous Papuans, who view rule by Indonesia as active colonization. Most of the province’s institutions are run by Indonesian migrants, who make up just more than half of the province’s population of 2.8 million. A long-standing strategy of regulation in the province has been for the politically and economically dominant migrant Indonesians to argue that the primitivism, innocence, and ignorance of indigenous Papuans means they are unable to assimilate discourses of self-regulation and self-control expected of more “modern” citizens of Indonesia (Timmer 2005a; Li 2007). This type of judgment colours HIV/AIDS prevention processes. In many outreach efforts, migrant Indonesians tell indigenous Papuans to adopt rational sexual practices, then fault them for failing to live up to expectations. The blame falls on Papuans for not heeding messages rather than on the providers for the problematic form or content of their calls for sexual restraint. This becomes part of a broader discourse that allows Indonesia to maintain colonial forms of political rule in the province. However striking these insights about the role of a rational sexuality in HI V/A I DS prevention efforts may be, what more can we learn if we accept Margaret Lock’s call to question the impact of scientific ideas and health technologies about the body? Lock exhorts us to ask questions which look beyond global scientific norms where the body is set apart from environmental and social variables (Lock

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2007b, 65). She expects, by implication, that we will challenge simplistic behavioural models of HI V /A ID S prevention that base success on behaviour modification only, for they starkly draw false distinctions between the body and social context. How is the body viewed and used in these technologies, and what relationship do these ideas and practices have to broader conditions? Asking this question in a location such as Papua, eastern Indonesia, raises important connections between violence, sexual violence, and H I V /AI D S interventions, connections that are not normally part of an analysis of efforts to prevent the transmission of H I V . Lock homes in on the categories and boundaries that link the body with a broader social context. She looks beyond unquestioned assumptions about “the body proper – that discrete, structured, individual myth of a European modernity” (Farquhar and Lock 2007, 10), in particular by refusing to reduce the body to a simplistic scientific model of the material body. Simultaneously, Lock (2007a; 2007b) refuses to reduce social experience to a black box of culture, environment, or politics. She has remained concerned with describing ways in which boundaries between body and environment are negotiated and the conditions within which they fluctuate. These negotiations do occur in some contexts through primarily scientific and biomedical institutions. However, Lock also forcefully signals the role of other institutions of power and politics, including state institutions and ideologies, such as policies built on ideas about gender, or agencies that regulate reproduction. Similarly, cultural contexts such as values around gender or life cycle transformations can also shape intersections between biological regularities of the body and wider environments (Lock 2007b; Lock 1993; Lock and Kaufert 1998). None of these institutions is neutral – one can argue that all formulations of the body are imbued with the capacity to explain and order and thus have the potential to be deployed in the service of particular political objectives. Medicalization is one critically important process through which the boundaries between body and context can be defined with such political force that the boundary comes to be accepted as a natural, unquestioned truth, and, in so doing, renders as natural the process of regulation. Although the boundaries surrounding the body are never absolute, medicalization can naturalize a (constructed) abnormal body. In so doing, “attention is deflected away from hierarchical

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arrangements [and] the control of knowledge” (Lock and Kaufert 1998, 20). Medicalization, Lock argues, is a “manifestation of potent, never settled, partially disguised political and cultural contests that inform normalized bodily discourse” (Lock 2007b, 200). Labelling a person as having the potential for disease, as happens to the indigenous sex workers described in the cases below, helps governments, health agencies, and other institutions to impose the order and constraints upon action that help create a responsive, selfregulating member of society. One important feature of projects of medicalization is the use of the concept of risk. The notion of risk helps to create a person who accepts the project of individual responsibility for their bodily health: “Once individuals have been informed about risk, they are expected to act accordingly, a dynamic that sets in motion a politics of responsibility that is soon transformed into a social obligation” (Lock and Nichter 2001, 11). Lock’s work has mostly concentrated on processes in technologically advanced states and, in particular, the success of self-surveillance and a hyper-rationalism that a mobilization of the concept of risk can produce (Lock and Nguyen 2010). This essay explores the ways in which the project of surveillance takes different shape in different contexts. In particular, I look at how the ongoing political project of medicalization is deeply embedded in local forms of regulation and control in less developed regions, where the institutions and technologies of biomedicine have not yet achieved hegemonic status. In this essay, I single out for detailed analysis the complexity of the links among medicalization, the body of the sex worker, and violence on the margins of the state. I do so by beginning with an event that took place in the central highlands town of Wamena in January 2006. This event, a two-day health checkup and HIV/AIDS information seminar, was targeted at women categorized as sex workers. This case, together with the experiences of other young women drawn from a larger research project on sex work,2 shows a particularly meaningful link between security forces who are given the power to control through physical force on the body – to mark the body, to make visible the signs of authority – and the communication of putatively neutral information about HIV prevention. The intersection of an international language of sexual rationalities coexists in Papua alongside practices that aim to assert total control over life

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through sexuality. I argue that HIV/AIDS interventions intersect with sustained, habitual, dehumanizing violence in a broader project that is only partly about promoting self-reliance and compliance. It is also about establishing certain persons as existing outside the parameters of normal entitlement; about legitimizing another kind of authority, that of total control over the conditions of life.

S e cu r it y F o rc e s a n d a n HI V/AI DS Semi nar: A n “ In h e r e n t ly V io l ent” S i tuati on In Papua’s volatile political and economic terrain, young girls are important targets for rational languages of self-improvement and risk awareness surrounding the burgeoning H I V epidemic. Like many other resource-rich, isolated communities, Papua possesses a new frontier culture of transient, youthful populations, an abundance of short-term work, a high incidence of drug and alcohol use, and a high incidence of violent interactions. As more money flows through the province, the sex industry has blossomed. Indonesian women are brought in to the province as sex workers, often under military supervision, moving from site to site.3 Alongside Indonesian brothel workers, young indigenous girls, who often leave rural homes to attend school, also find themselves engaging in sexual transactions, usually at the street level. H I V rates have skyrocketed.4 Intervening in the lives of sex workers in brothels, and to a lesser extent in the activities of street sex workers, has been the focus of most of the state’s primary H I V prevention activities. The targeting of sex work, the HIV prevention industry, politics, and economics mesh into a condition of violence Spyer astutely describes as the sedimentation of violence: violence that is sustained, coded, normalized, acute, and long term. The sedimentation of violence occurs, when the familiar, habitual practices of everyday existence are rent by novel apprehensions and dangers that, in turn, aid and abet the production of violence – forming a highly complex context in which violence becomes increasingly possible … The mutually constitutive sedimentation of violence and production of anticipatory practices by social actors spawn supplementary effects that form the conditions of an inherently “violent situation.” (Spyer 2006, 189)

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The case study below describes what prevention initiatives look like in an inherently violent situation. It draws from a study I conducted between 2003 and 2007 on indigenous sex workers in the highlands region. Of the twenty-six women interviewed for this study, all had experienced episodes of physical violence in their lives. For some, violence occurred in an early sexual assault. For many others, a violent husband or partner pushed them into the sex industry. For still others, violence occurred through multiple avenues – physical assault, gang rape, abandonment, and the violence engendered by long-term acute poverty. Alongside actual violence lies the threat of it. As the case study shows, health care cannot be separated from physical violence, from the threat of violence, or from the wider context of Papua’s inherently violent situation (see Figure 2 and Figure 3). In January 2006, the provincial health ministry and external funders finally marked the frontier town of Wamena as an H I V crisis zone, initiating a series of prevention measures. A highly visible project involved rounding up known street and brothel sex workers for a two-day workshop. Hospital staff (sanctioned by the regional health office), the regent’s office, and social services arranged to send soldiers to each of the known locations where young women solicited customers and to tell the women to attend a seminar if they wanted to avoid a beating. One of the women contacted by the military visit was Lida. Lida was an indigenous second-generation sex worker, aged around twenty. Lida experienced high levels of disenfranchisement when her father abandoned the family while she was growing up. Lida regularly provided sexual services to higher-ranked members of the military and police, as well as to government bureaucrats. She said she was popular as a sex worker with elite men because she “likes to smile and put on a big act, be sexy.” She was sitting at home with her mother and her two children when a soldier came by early in the morning and issued a threat. He ordered her to attend a health session the following day. Lida was told they were going to give her blood tests. The soldier told her that if she didn’t attend, the soldiers would come back the next day, track her down, and beat her up. Lida and eighty-six other young women, also contacted through visits from soldiers who uttered similar threats, responded with alacrity to the demand and sat for two days in a local hall. The hall was a local bar rented for the occasion. The young women were seated on benches in the hall’s centre. They aligned themselves

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2 Police and military conduct training exercises and patrol the streets of Wamena on a daily basis. (Photo by L. Butt)

primarily by race. On one side sat indigenous women, mostly known sex workers who worked the streets. On the other side sat migrant Indonesian women from the town’s brothels. At the front sat the doctors and the health staff, all dressed in white, sipping soft drinks and eating cake. In a row of chairs along one side of the hall sat government officials and several religious officials from regional Catholic and Protestant churches. On the other side of the hall sat a row of soldiers with their guns drawn. Over the course of two days, Lida and the other women underwent a series of tests and workshops. On the first day the women were listed by name and status. Then they waited for two hours before undergoing tests for “the usual sicknesses – malaria, sexually transmitted diseases,” said a young sex worker named Nonita. Nonita noted the hospital staff were all dressed in protective masks and gloves during the exam. Nonita felt insulted by the protocol of the event. Sex workers were lined in a row and filed by each of the medical personnel to be examined according to each physician’s specialty: dentistry, general medicine, optometry. Nonita was angry: “Why did they need to wear those masks? We came there clean!” Those with

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3 Police with guns drawn at a church’s Christmas Day celebration. (Photo by L. Butt)

diseases that could be diagnosed on the spot were also treated on the spot, with some creative license. Nonita, for example, complained of a stomachache but received treatment for gonorrhoea. The point of the examination, according to an advocate who attended the meeting at Lida’s request, was to gather baseline data so that more sustained H I V/A I DS prevention efforts could be set up among Wamena’s sex workers. Nonetheless, the hospital staff did not offer H I V tests because there were no tests available. One of the consequences of rapid development activities in the province had been an increase in corruption within the regional administration, and this meant that monies for H I V testing had long since been redirected into a bureaucrat’s pocket. The morning of the second day was filled with information about preventing the transmission of HI V. Doctors described condoms, safe sex, and HI V and A I D S using an overhead projector and a screen. Throughout, health staff acted in a highly authoritative manner, silencing queries, cutting off questions, and using the spatial layout of the room, and the presence of the soldiers and religious observers sitting along the side, to enhance their authoritative medical knowledge. In particular, at one point a doctor asked a wellknown and vocal sex worker to come up and demonstrate how to put on a condom. She made jokes about the task, showing how she

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would get the client to accept a condom and using the microphone as a substitute for a penis. The doctor brusquely interrupted her: “This isn’t funny,” he snapped and told her to finish up the demo without talking. When the demonstration was over he donned gloves and grabbed a tissue before gingerly removing the condom from the microphone and dropping it into the garbage, a look of disgust on his face. No condoms were distributed. Lastly, the young women were given the opportunity to join work groups and receive Rp 1,000,000 (US D 100) to take up alternative income-generating activities such as seamstress work or market stall vending or similar small-scale economic initiatives. Lida was excited at this possibility, for she finds many aspects of sex work degrading. Her plan was to sell plates of precooked rice and pork at the market for Rp 10,000 (USD 1) per plate (see Figure 4). She spent her money on cooking pots, plates, rice, and pork. Her entire family was involved with the work of purchasing and preparing the meat for sale at the market. When I last saw her, she was working her second day as a market seller. She sat dejected behind her stall, with all of her investment gone, and plates of food all rapidly going off in the hot midday sun. She had made less than Rp 200,000 (U S D 20); “A big loss,” she said.

Why W e r e S o l d ie rs G ua rdi ng the HI V/AI DS In f o r m at io n S emi nar? The exercise of rounding up sex workers can be seen as a way to catalogue and categorize persons. The production of medical data allows for the creation of norms, which in turn help establish what are and are not normal health standards. However, I query whether the exercise was just about labelling the sex worker as unhealthy so as to inculcate norms of conformity. I suggest it was also about acting on the body, using the combined legitimacy of threats of violence and the act of the medical examination to drive home a political relationship that excludes sex workers, and indigenous sex workers in particular, from full social participation. First, health workers rendered their political authority visible through physically acting on the bodies of all sex workers, indigenous or migrant. They used symbols to establish their professionalism – white coats, gloves, stethoscopes. They poked and prodded the young women, looking mostly for sexually transmitted infections, making tangible

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4 Lida selling pork and rice at the market. Lida died from A I D Srelated complications in 2009. (Photo by L. Butt)

their unspoken assumptions about the link between sex worker and sexually transmitted infection. Health workers assume the right to display hierarchies through the physical examination, and those actions are legitimated by a language of rational sex. In their actions, neither the soldiers involved in the roundup nor the health staff treated sex workers as their equals. In fact, the health agencies neglected to provide food or even water for the young women on the first day (though they were well supplied themselves) until they were sharply reminded by the sex worker advocate of their obligation to display basic courtesy and to treat sex workers if not as equals, at least as human.

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Second, the act of rounding up sex workers and forcing a physical examination also legitimated the role of the military in creating sedimented violence, in Spyer’s (2006) terms, where health care intersects with other forms of violence and serves to enhance apprehension and create new fears. The police and the military are key players in this process. The ubiquity of security personnel in all walks of life, including health care, is partly a result of the province’s long-standing status as a Military Operation Zone (Daerah Operasi Militer) from 1974 to 1998, which gave the military exceptional powers. It is well known that security personnel target indigenous Papuans. The reasoning, according to one military leader, is because “Papuans are still prone to be influenced by individuals who feel discontent … What is needed is to educate these masses to the point that they become full members of the Indonesian nation. Those opposing these ideas have to be eliminated with force if necessary” (Timmer 2005a, 3). Most of the security personnel in Papua are migrants from other parts of Indonesia. Police, elite paramilitary units, mobile brigades, security agents, and soldiers numbered more than 23,500 in 2006,5 which is five times the average per capita deployment in the rest of the nation (Chauvel 2008). Personnel tend to cluster in volatile zones. At one point in this research project, for example, after a violent clash between separatists and the military, there was approximately one security personnel for every eight civilians in the town of Wamena (Butt 2005). The police and military have consistently deployed violent tactics to reinforce their power, in large measure because they can. The military in Papua operates largely separate from judicial processes. A commonly reported practice across the province is for extreme violent security retaliation targeted at unlawful indigenous protests. The military in Papua operates outside the law, yet still has a function within it: “Indonesian B R I MOB [mobile brigade] are acting with impunity today in Jayapura, shooting into dormitories and pulling Papuan people from their cars. Police actions in Jayapura appear to be arbitrary vengeance” (Jameson 2006). In another example, a series of retaliatory assaults between indigenous highland students at a dormitory in the capital finally ended in 2005 when police were acquitted of killing four Papuan students. An observer noted, “The Abepura verdict shows that human rights violations in West Papua are not taken seriously by the central

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government. The verdict demonstrates that there is no political will to deliver justice to the West Papuan people. The state is not even willing to protect the right to life for West Papuans” (Rayfield 2005). Despite efforts to implement reforms to reduce this kind of incident, Richard Chauvel (2009) suggests Papua remains an Achilles heel for a democratizing Indonesia. It is the country’s last and most intractable regional conflict, the battleground between old and new Indonesia. Old Indonesia, Chauvel suggests, considers soldiers torturing fellow Indonesians as merely an “incident.” The new Indonesia aspires to ideals of democratization and cosmopolitanism: a multiethnic and multifaith society. Yet incidents continue in Papua, not necessarily because of high-level instructions but because low-level soldiers live out a deeply ingrained institutional culture of violence in the way security forces interact with Papuans. Kirsch (2010) argues the aggression is legitimized through representations of Papuans as a violent people, developed as part of a colonial discourse that allowed for interventions to subdue and educate. By keeping alive the idea of Papuans as engaging in perpetual warfare, these narratives legitimate the continued militarization of the Indonesian province and obscure the violence of the state’s pacification measures. The culture of impunity within which security forces operate expands into economic arenas as well. In Papua, security forces supplement poor wages by providing protection for resource companies through direct involvement in logging, fishing and mining, and through extortion (Timmer 2005a; Chauvel 2006). Security personnel also play multiple roles in the arena of health. Soldiers are regularly used to round up people, especially women and children, for health initiatives.6 Soldiers also help organize monthly health checkups for sex workers in brothels. They bring in the women, supervise the examination process, and make sure they are returned back to the brothel. Security forces can also prevent access to health care. Timmer (2005b, 451) describes a military campaign in which the armed forces prevented humanitarian health and church workers from accessing injured civilians. Human Rights Watch (2007) documented an extensive list of human rights abuses by security forces, which included denying access to basic health services. I was given eyewitness accounts of a 2002 incident where the military was specifically deployed to prevent injured dissidents from getting medical assistance. In sum, there is no distinction in the eyes of Papuans between those

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interventions that might be presented as neutral, moral realms, such as the obligation to provide health care, and those that are presented as explicitly political, such as controlling dissidents. In everyday life, for most Papuans, health care is simply politics by other means. Turning now to more detailed cases on the intersection of medicalization, sex work, and military interventions, I describe the interweaving of security personnel and violence in multiple arenas of a young sex worker’s life. I have suggested so far that sex workers are medicalized in ways that establish them as a perceived threat to the overall health of the body politic, but also in ways that establish them as outside of the body politic. The case of Rosa emphasizes that the sedimentation of violence occurs as an almost taken-forgranted feature of everyday life, and that medicalization intersects with the penetration of violence in all facets of sex workers’ lives.

R o sa : M il ita r iz at io n and Vi olence as E v e ry day Li fe Rosa is a dynamic and quick-tempered young woman who has spent most of her life in Wamena. Rosa’s mother, an indigenous woman, married an indigenous soldier from the coast who had been stationed in Wamena after the 1969 takeover. Her marriage was fractious and characterized by violence. Rosa’s father eventually took on a second, then a third wife, and relocated to the coast when Rosa was ten years old. Rosa’s mother has practiced what is called survival sex, exchanging sex for subsistence goods on an informal basis. Rosa and her siblings all say they had a turbulent life. Rosa grew up in the era of A I D S. In her teenage years when she first started acting out, in the late 1990s, H I V rates were rising rapidly. Interventions in the highlands were slow to kick in. U S AI D , which had initially funded some activities in the region, withdrew support in the highlands in 2001, and World Vision International remained, along with the largely ineffective National Commission on HIV /A I D S, the only significant voice of regional H I V education during this period. Unlike most young girls, Rosa was exposed to the very limited HIV /A IDS education that was offered because she flitted in and out of street sex work over her teen years. The leader of Wamena’s only girl street gang, Rosa experienced a range of new enticements including pornography as part of sexual encounters, glue sniffing, and

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whisky. Rosa also engaged in commercial sex with policemen and soldiers, and with state officials and resource extraction workers. When Rosa’s behaviour fit neatly with understandings of street sex workers, Rosa was once or twice recruited by street outreach workers to receive cursory information on H I V and AI D S . When Rosa was not actively engaged in the street sex culture, she quickly fell outside the target zone. In 2005 Rosa established a steady relationship with a indigenous soldier, Pak Edi, who promised her marriage and stability. Rosa says she loves Edi and looks beyond Edi’s work as a soldier to appreciate him as a person. Some of his platoon mates were involved in several violent sexual assaults on Rosa when she was in her girl gang, but Rosa does not see Edi as a potential threat to her safety even though he has repeatedly physically and sexually assaulted her and has forced her to run away from him on several occasions. Rosa’s case highlights two important aspects of the circulation of HIV prevention discourse. First, Rosa receives basic information only when she is behaving in a way that categorizes her as a certain type of high-risk youth. Young women as a target risk category conforms to what Eileen Stillwagon (2006) calls the dominant paradigm explaining HI V /A I D S: sexual behaviour is the key determinant of rates of H I V in different populations. Although a wider range of environmental factors such as work practices, income levels, or abusive domestic relationships have been shown to correlate with H I V/ A IDS infection rates (Fassin 2007), in practice key interventions by multilateral organizations focus on individual-level effects and behavioural variables only as they pertain to sexual practice. Placing individual behaviour at the centre of prevention implicitly supports the modernizing endeavour of promoting Western values of rationality, where behaviour patterns can and should result from wellreasoned decision-making processes. Importantly, exposure to this language makes no difference to what Rosa does. She only uses condoms, for example, if her sexual partner requests it. She engages in sex with multiple partners. Her assimilation of notions of selfresponsibility and behaviour modification is minimal. She can talk the talk, but she doesn’t walk the talk. Selective targeting such as Rosa experienced is a feature of H I V / A IDS interventions globally – sex workers over housewives; intravenous drug users over glue sniffers – but on the margins of an authoritarian nation-state, selectivity is more than a simple effect of bad

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policy and inadequate resources. Rosa receives half messages because health administrators consider half messages acceptable for this population. Large gaps of no information interspersed with sudden bursts of intense information, offered in a way several recipients describe as berating and demeaning, creates conditions where target groups are ill-informed, therefore unlikely to embrace rational sex, and then quickly blamed for their inconsistent knowledge levels and ongoing dangerous sexual practices. The second noteworthy feature of Rosa’s case is that she is the second generation in her family to engage in long-term relationships with men whose paid work is to protect the boundaries of the state and to safeguard its policies. The same people she has sex with for money and for love are the people who implement policies that are widely regarded by Papuans, including Rosa herself, as genocidal. They are the same people who control a range of activities that directly affect Rosa’s sexual practice: pornography, alcohol, and the sex industry. They are also the same people who force her to attend sexual health workshops. As Rosa is at pains to note to herself and to me, individual members of the military are often good people, and individual episodes of violence or assault appear to her as reflections of individual character weaknesses rather than problems with the presence of the institutions themselves. But an analysis of forms of bodily violence quickly identifies the instigators of acts of physical violence on the street, at the clinic, or in the bedroom as one and the same person. This happens too often to accept it as something brought about by chance or the vagaries of personality. The experience of other sex workers who have relations with soldiers reinforces the prevalence of sexual violence in transactions. Another street sex worker, Selina, is a young woman who engaged in sexual relations – initially by force – with Indonesian migrants and who now is a known sex worker living in a small town outside of Wamena. Selina acknowledges that, as an indigenous woman servicing mostly soldiers, she regularly risks assault, violence, and retribution in her work. The likelihood of violence shaping the sexual transaction is greater with migrants entering the region than with indigenous Papuans, several other sex workers noted. This may be because these commercial relations take place largely outside local kin networks and outside valued cultural norms. Threats involving rifles and assaults involving rifles and rifle butts, for example, were reported as a regular feature of sex with security personnel. Another

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young woman, who engaged in casual street sex, told me of a soldier, “a hard and nasty man,” who forced her to have oral sex with him twice. Both times she refused but was forced into it by threats of violence. The second time he said, “If you don’t want to have sex with me, and try and run away, I’ll shoot you.” Another young woman, also sexually active but only peripherally involved in the sex trade, told a similar story of being taken to a remote location by a soldier and being forced to perform oral sex while guns were set out nearby. These stories came as no surprise to me, or to the girls telling them, for soldiers often rape women as part of a regulatory strategy, saying it is a punishment for their supposed involvement in resistance politics. Soldiers also rape women simply because they feel like it. As one soldier said after a documented incident, “I am a member of TN I [the armed forces]. I do what I like” (Human Rights Watch 2007, 57). The opportunistic and arbitrary nature of these attacks has fuelled an overall atmosphere of insecurity that restricts women and girls’ freedom of movement as they modify or abstain from daily activities to reduce the risk of rape and other forms of violence. Security forces appropriate private justice and violence afforded them by their position in the state, and the relationships they have to sex workers show this – partners and protectors, or abusers and sexual predators – depending on the exigencies of the situation.

D is c u s s io n : B o u n da ri es of I nclusi on a n d E xc l u s io n at the Margi ns Exploring the role of HIV/AIDS prevention at the margins of the state brings home the important role medicalization plays in wider political projects. The political techniques by which the state integrates the natural life of individuals into its practices, and the technologies of the self by which subjectivization brings the individual to bind herself to her own identity and consciousness and, at the same time, to an external power, have both been well explored (Agamben 1998; Farquhar and Zhang 2005). But, on the margins of the state we see that peripheries are places where states do not necessarily attempt to manage or pacify populations through inculcating self-awareness. Rather, management happens, as I have shown, through explicit, context specific, forceful, sometimes violent, sporadic, and inconsistent interventions onto the body.

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The case studies show the important role of health promotions in formulating parameters of inclusion and exclusion. Other scholars have described patterns of exclusion and discrimination, where those who are HI V -positive or are seen to be are often denied basic entitlements and the rights of citizenship as a result of their status (e.g. Comaroff 2007; Fassin 2007). But by following Lock in privileging the role of bodily processes and boundaries in our assessments of medical technologies and practices, I observe in Wamena that extraordinarily targeted and invasive processes of exclusion occur well before anyone is tested, much less diagnosed, with H I V . It is not just H I V as disease that creates new configurations of integration and exclusion; it is the languages and practices surrounding HIV and AI D S as well. I also note, drawing from Lock’s focus on the complexities of medicalization, that there is a consistent intersection of violence, sexual violence, medical care, and regulatory processes. The medical technologies and practices are used the way Lock suggests they often are, that is, to promote the self-regulating, self-responsible citizen essential to modern forms of governance. However, they are also used to display physically coercive mechanisms of state authority and work to further the sedimentation of violence. The sedimentation of violence emphasizes how sovereignty is exercised not over territories but over life and death (Agamben 1998). It is on the margins of the state that we see very easily how it is that “politics becomes the domain in which ‘life’ is put in question” (Das and Poole 2004, 10). The stated role of soldiers in remote highlands Papua is to enforce boundaries of the Indonesian state, but one of their other roles is to enforce the idea that the state retains the power to define certain persons as less worthy of entitlement than others. They do this by acting on the bodies of sex workers in multiple ways, for “politics is always a matter of the body, and ‘the body’ is always already a biopolitical body” (Norris citing Agamben 2005, 15). The particular confluence in Papua of ongoing colonialism, racism, and a frontier economy, in which state regulation only gets in the way of profit making, creates a particularly powerful space that Agamben calls a “zone of indistinction … in which the very concepts of subjective rights and juridical protection no longer make any sense” (Agamben cited in Ong 2006, 196). Young women are particularly useful public targets for demonstrating the power of a zone

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of indistinction because young women are especially vulnerable in these political and economic conditions. Acting on the body of the sex worker is a strong, public assertion of impunity. The fact that soldiers and policemen then go home and sleep with the same women they have just corralled, have children with them, and get enmeshed in episodes of domestic violence with them, suggests the effort to exclude certain persons from a meaningful social existence is intricately interwoven into even the most intimate everyday realms of young women’s lives. The sedimentation of violence in everyday practices, and physical violence at the hands of soldiers as violence’s most visible manifestation, makes it hard to hear the voices of resistance. Banishment or disenfranchisement is never absolute, Comaroff (2007, 211) argues, and so we must look to what Comaroff calls “counterbiopolitics” to see ways in which these forms of regulation are incomplete. Indigenous activists have noted the absence of readily available condoms and the paucity of antiretroviral therapies and call these genocidal practices (Butt 2011). However, these counterpolitics rarely take organized shape, existing mostly at the level of conspiracy theory, and are increasingly discounted by newly powerful elite Papuan politicians (Butt 2008). There is a pragmatic “depressing” of alternatives that keeps potentially articulate people intimidated and in their place: “the regulating and fostering of life involves the constant threat of life disallowed” (Pinto 2006, 99). Resistance by sex workers shows up instead in small personal actions: a saucy demonstrator’s impudence in front of an authority figure; or a sex worker who through cajoling and kindness deflects a soldier’s anger, takes away his weapon, and creates a rare opportunity for safer sex for herself. The involvement of military forces in establishing and denying belonging through their involved role in promoting rational languages of health might be noted elsewhere and in groups other than sex workers. In places where the rational language of health, drawn from global trends deeply inflected by forms of late capitalism, meets authoritarian political practice, rational languages may be deployed to serve other specific, targeted purposes of exclusion. The impunity with which those responsible for the security of the state both use and override notions of self-care and self-responsibility should alert us to the intersection of rational models of health and the use of multiple forms of violence, as it may be more subtly expressed in regimes with greater claims to democracy.

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no t e s 1 In 2007, what was once the single province of Papua (formerly known as Irian Jaya) was divided in two provinces: Papua and West Papua. The research discussed was carried out in Papua, but many of the patterns discussed herein apply to both provinces. 2 Funding for this research was provided by the Social Sciences and Humanities Research Council of Canada. I am grateful to Steve Ferzacca for inviting me to co-organize a session at the Society for Medical Anthropology conference in 2006 on rational languages of health, where I presented an earlier version of this paper. I am also grateful to Sarah Pinto for her incisive comments on that presentation, and to my volume coeditors for suggestions which helped improve this paper. Magda Matuan and Penina Walilo were outstanding research assistants, and Cordelia Chu provided vital ethnographic information. I am grateful to the respondents in this study for sharing their honest and insightful assessments of the challenges and riches of their personal life. 3 Sex work is not illegal in Indonesia. See Hull et al. 1999. 4 As of June 2010, the provincial health office tallied 2,858 cases of A IDS. The Ministry of Health acknowledged in 2007 that 2.4 per cent of fifteento forty-five-year-olds are HI V -positive and that, in several sites, up to 22 per cent of sex workers in established brothels are HIV -positive (Ministry of Health 2007). However, gross underreporting pushes Rees and Silove (2007) to argue for more realistic estimates of approximately seven per cent of the adult population. 5 Chauvel (2006) notes a probable increase in numbers as the army has committed to building a new division in the city of Sorong. 6 This occurs in other parts of Indonesia as well as part of an ethos of community participation that makes up part of the military’s mandate.

R e f e r e nce s Agamben, G. 1998. Homo Sacer: Sovereign Power and Bare Life. Trans. D. Heller-Roazen. Stanford, CA: Stanford University Press. Antara. 2005. Soldiers in Indonesia’s Papua Urged to Shun Prostitutes. H I V/A I DS Education Global Information System. http://www.aegis. com/news/ads/2005/AD052472.html. (Accessed 20 December 2007). Butt, L. 2005. “‘Lipstick Girls’ and ‘Fallen Women’: A IDS and Conspiratorial Thinking in Highlands Papua, Indonesia.” Cultural Anthropology 20(3): 412–42.

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– 2008. “Silence Speaks Volumes: Elite Discourses on HIV/A IDS in Papua.” In Making Sense of a i d s : Culture, Sexuality, and Power in Melanesia, edited by L. Butt and R. Eves, 116–32. Honolulu: University of Hawai’i Press. – 2011. “Can You Keep a Secret?: Pretences of Confidentiality in HIV/ A I D S Counselling and Treatment in Eastern Indonesia.” Medical Anthropology, 30(3):1–19. Chauvel, R. 2006. “Australia, Indonesia and the Papuan Crises.” Austral Policy Forum 06–14A 27 April 2006. Nautilus Institute. http://www. nautilus.org/~rmit/forum-reports/0614a-chauvel.html. (Accessed 14 June 2008). – E-mail message to author, 14 June 2008. – 2009. “Between Guns and Dialogue: Papua after the Exile’s Return.” Austral Policy Forum 09–11A 23 April 2009. Nautilus Institute. http:// www.nautilus.org/publications/essays/apsnet/policy-forum/2009/ nicholaas-jouwe. (Accessed 10 October 2011). Comaroff, J. 2007. “Beyond Bare Life: A IDS, (Bio)politics, and the Neoliberal Order.” Public Culture 19(1): 197–219. Das V., and D. Poole. 2004. “State and its Margins: Comparative Ethnographies.” In Anthropology in the Margins of the State, edited by V. Das and D. Poole, 3–34. Santa Fe: New School of American Research Press. Eves, R., and L. Butt. 2008. “Introduction.” In Making Sense of a i d s : Culture, Sexuality and Power in Melanesia, edited by L. Butt and R. Eves, 1–23. Honolulu: University of Hawai’i Press. Farquhar, J., and M. Lock. 2007. “Introduction.” In Beyond the Body Proper: Reading the Anthropology of Material Life, edited by M. Lock and J. Farquhar, 1–16. Durham and London: Duke University Press. Farquhar J., and Q. Zhang. 2005. “Biopolitical Beijing: Pleasure, Sovereignty, and Self-cultivation in China’s Capital.” Cultural Anthropology 20(3): 303–27. Fassin, D. 2007. When Bodies Remember: Experiences and Politics of a i d s in South Africa. Berkeley: University of California Press. Hull, T., E. Sulitsyanangsih, and G. Jones. 1999. Prostitution in Indonesia. Jakarta: Pustaka Sinar Harapan. Human Rights Watch. 2007. Out of Sight: Endemic Abuse and Impunity in Papua’s Central Highlands. New York: Human Rights Watch. Jameson, M. 2006. Indonesian Police in Jayapura West Papua Are Meting out Arbitrary Vengeance. Press release issued by Tapol, posted at: http:// www.blythe-systems.com/pipermail/nytr/Week-of-Mon-20060313/ 033731.html. (Accessed 7 October 2009).

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Kirsch, S. 2010. “Ethnographic Representation and the Politics of Violence in West Papua.” Critique of Anthropology, 30(1): 3–22. Li, T.M. 2007. The Will to Improve. Durham: Duke University Press. Lock, M. 1993. Encounters with Aging: Mythologies of Menopause in Japan and North America. Berkeley: University of California Press. – 2007a. “The Future is Now: Locating Biomarkers for Dementia.” In Biomedicine as Culture: Instrumental Practices, Technoscientific Knowledge, and New Modes of Life, edited by R. V. Burri and J. Dumit, 61–86. New York: Routledge. – 2007b. “The Final Disruption? Biopolitics of Post-Reproductive Life.” In Reproductive Disruptions: Gender, Technology, and Biopolitics in the New Millenium, edited by M. Inhorn, 200–24. New York: Berghan Books. – and P. Kaufert. 1998. “Introduction.” In Pragmatic Women and Body Politics, edited by M. Lock and P. Kaufert, 1–27. Cambridge: Cambridge University Press. – and V.-K. Nguyen. 2010. An Anthropology of Biomedicine. Chichester, West Sussex: Wiley Blackwell. – and M. Nichter. 2001. “Introduction.” In New Horizons in Medical Anthropology: Essays in Honor of Charles Leslie, edited by M. Nichter and M. Lock, 1–34. Cambridge: Cambridge University Press. Ministry of Health and Statistics Indonesia. 2007. Risk Behaviour and h i v Prevalence in Tanah Papua, 2006. Jakarta: Ministry of Health. Norris, A. 2005. “Giorgio Agamben and the Politics of the Living Dead.” In Politics, Metaphysics and Death: Essays on Giorgio Agamben’s Homo Sacer, edited by A. Norris, 1–30. Durham: Duke University Press. Ong, A. 2006. Neoliberalism as Exception: Mutations in Sovereignty. Durham: Duke University Press. Pigg, S. 2002. “Too Bold, Too Hot: Crossing ‘Culture’ in A IDS Prevention in Nepal.” In New Horizons in Medical Anthropology: Essays in Honour of Charles Leslie, edited by M. Nichter and M. Lock, 58–80. London: Routledge. Pinto, S. 2006. “Grief and the Politics of Depressing Speech.” Social Text 24(1): 82–102. Rayfield, A. 2005. Indonesian Police Set Free after Torturing West Papuan Students to Death. Kabar-Irian listserve. http://www.kabar-irian.com/ pipermail/kabar-irian/2005–September/000706.html. (Accessed 14 June 2008). Rees, S. and D. Silove. 2007. “Speaking Out About Human Rights and Health in West Papua.” The Lancet 370(9588): 637–9.

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Spyer, P. 2006. “Some Notes on Disorder in the Indonesian Postcolony.” In Law and Disorder in the Postcolony, edited by J. Comaroff and J. L. Comaroff, 188–218. Chicago: University of Chicago Press. Stillwagon, E. 2006. a i d s and the Ecology of Poverty. Oxford: Oxford University Press. Timmer, J. 2005a. Conflict Dynamics in Eastern Indonesia. Canberra: A NU -Center for Conflict and Post-Conflict Studies Occasional Papers. – 2005b. “Papua.” The Contemporary Pacific 17(2): 448–56.

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4 The Gendering of Depression in Japan1 Junko Kitanaka

I n t ro du c t io n : T h e P e culi ar Genderi ng o f D e p r e s s io n i n Japan Depression has long been represented in the West as a quintessential female malady, where women are said to be twice as likely as men to become depressed. This gender ratio has been used by some feminists to argue that depression epitomizes women’s suffering (Jack 1991). Japan poses a challenge to this characterization, however, because, until recently, rates of male depression had been as high as – sometimes even higher than – those of women. Throughout the twentieth century, numerous Japanese psychiatrists have commented on this statistical anomaly (e.g., Hirasawa 1966; Naka 1932; Nakane et al. 2004). As Margaret Lock called to our attention in 1993, Japan was the only country out of the twelve that participated in the 1973 World Health Organization (WH O) cross-national survey on depression, in which slightly more men than women suffered depression (Lock 1993). While this data was recently challenged by the epidemiological community survey on depression, which indicated a gender ratio akin to that suggested by the Western data (Kawakami et al. 2005), there have been few empirical investigations into what had created this peculiar gendering at the epidemiological level. Depression is also gendered at the level of popular representation, and here, the Japanese difference is even more striking. Popular discourse has represented depression as a male malady, and this has been particularly pronounced since the 1990s when depression emerged (with the record high rates of suicides) as what the media began to call a national disease. In contrast to the prevailing image

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of the depressed person in the West as a melancholic housewife, in Japan, depression’s victim has been overwhelmingly represented as a burned out salaryman. How do we account for this gender anomaly? Some earlier Japanese psychiatrists used to suggest that men were more likely to become depressed because they simply suffered more. Their reasoning was that men, given their higher social standing, were exposed to more social stress, while women, with their lower social responsibility, remained more protected. Other psychiatrists have suggested, however, that women’s lack of social standing, and their economically dependent status, had resulted in inadequate attention to their depression. In other words, women have suffered as much as men, if not more, but their suffering had remained largely unrecognized. If so, this would parallel the ironic situation that had surrounded menopause until recently in Japan – as analyzed by Lock (1993) – whereby Japanese menopausal women largely escaped medicalization because of the relative lack of Japanese recognition of these women’s distress. While this kept women out of doctors’ offices and encouraged them to seek out other cultural resources, even prevented them from pathologizing their experiences, it also had the unfortunate result of making them believe in the hegemonic discourse that delegitimized their distress even against – at times – their own subjective experience. Drawing on this interplay between medical representations and subjective experiences, I examined the narratives of twelve men and thirteen women who were recovering from depression in Japan. I also participated for a year in a depression support group, which was exclusively male. These results are analyzed in light of the ethnographic fieldwork I conducted at three psychiatric institutions in and around Tokyo, particularly at a university psychiatric department where I conducted participant observation of everyday clinical practice over a two-year period. What emerged from these investigations was that men and women suffer differently because of the particular gendering of depression in Japan.

T h e P at h o l o g y of Overwork A key factor for understanding the gendering of depression in Japan is a rather distinctive psychiatric master narrative about workinduced depression. This master narrative asserts that depression is

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most likely to afflict those who are serious and hardworking, particularly when they are placed in an overwork situation. This theory is often assumed by both medical professionals and lay people to be a universal scientific theory, when in fact it is rarely heard outside Japan (save Germany). The original theory dates back to the 1930s, when the group led by Dr Shimoda Mitsuzo of Kyushu Imperial University found that their predominantly male, depressed patients tended to share a certain set of personality traits (see Naka 1932). Drawing upon Ernst Kretschmer’s ideas about constitution and psychopathology, Shimoda argued these traits were biologically determined and named them shûchaku kishitsu (immodithyme constitution) marked by diligence, thoroughness, and a strong sense of responsibility. While these personality traits were what made these patients successful in their work in the first place, it also led them to habitually push themselves beyond their limits, until they fell into depression at the height of their exhaustion. Depression, for Shimoda, was thus a “mechanism for self-preservation” – even an adaptive means of “escape into illness” (Shimoda 1950). This premorbid melancholic personality theory of depression – though initially ignored – was reappraised and further developed by psychiatrists, especially after the introduction of antidepressants in the late 1950s. Some psychiatrists began to elaborate on social aspects of Shimoda’s theory of depression. They began to argue that such a personality is not necessarily biologically wired but can be socially cultivated, in fact massively produced, as the most desirable type of worker for corporate Japan. Further developing this theme in the 1990s, some psychiatrists began to popularize terms such as “overwork depression” and “overwork suicide” to help workers and their families win economic compensation from companies for driving them to depression and even suicide through excessive work stress. Emphasizing that the depressed are not pathological deviants but ordinary people victimized by social predicaments, these psychiatrists have helped to elevate the depression discourse to a kind of social critique. Notably, the psychiatric master narrative of premorbid melancholic personality has been adopted not only by (left-leaning) psychiatrists but also by pharmaceutical companies in their campaigns for destigmatizing and normalizing depression. This master narrative is what echoed through the narratives of the people I met, though it also seems to have produced markedly different effects according to their gender.

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M a l e D e p r es si on The depressed, Japanese psychiatrists say, are the most normative Japanese. With their self-sacrificing devotion, discipline, and sense of responsibility, they are, in the well-known dictum of Shimoda, “model (male) youths, model employees, model officers.” True to these words, the male patients the psychiatrists introduced to me as typical patients of depression were always hardworking men. They first and foremost discussed work stress as the cause of their depression, and their narratives were remarkably uniform in their structure, indicating an increasing amount of work, fatigue beyond limit, eventual collapse, and recovery through simple rest. Men’s narratives also characterized a relatively smooth recognition of their depression by their family and by medical professionals, followed by a congenial relationship with their psychiatrist, who helped shape their understanding of depression as a product of overwork. Overwork as the Cause for Depression This was evidently the case with Kobayashi-san,2 a fifty-year-old civil servant working for the central government and one of the first people I was introduced to by psychiatrists as embodying Shimoda’s notion of melancholic premorbid personality. His narrative gives a glimpse into what might go through the minds of some Japanese men who risk literally working themselves to death. Kobayashi-san began to chronologically recount his experience. Ten years previously he had been working in Kasumigaseki (the part of Tokyo where most governmental offices are located) and was engaged in an intense negotiation with the Ministry of Finance over the annual budget for his ministry. A new computer system for budget management had been introduced, but not wanting to hurt his computerilliterate boss’s feelings, Kobayashi-san did everything manually and brought back extra work to do at home every night. Sleeping for only three hours each night and working on weekends, Kobayashisan suddenly found himself feeling suicidal one day. I was in the office on a Sunday, when my mind went blank: then the thought occurred to me that I might throw myself out of the window. I had heard about people jumping (from high rise

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buildings) in Kasumigaseki. I wondered if I might just do the same … I simply wanted to escape from it all. In the early 1990s, mental health was still not something people talked about in his office: “We would habitually exceed 100 extra hours of overtime per month. If someone happened to drop dead, then superiors would consider providing the deceased’s family with workers’ compensation, but that was it.” Kobayashi-san said he did not think his problem was depression and thought that he was simply weak, lacking the ability to carry out the job. Similar to the illness histories recounted to me by other depressed patients, he was soon hospitalized, not for depression, but for a duodenal ulcer he had developed. His initial encounter with a psychiatrist began when he experienced what Japanese psychiatrists commonly refer to as “promotion depression.” At the time, Kobayashi-san had been transferred to the southern part of Japan as a stepping-stone to his next promotion. The job proved to be highly stressful, however, as he had to constantly negotiate with the strong labour union there. Trying to smooth things out by going out drinking with union leaders every night, Kobayashi-san felt thoroughly exhausted after eight months and simply could not go to work any longer. His worried wife took him to an internist, who then referred him to a psychiatrist. The hospital hid the fact that their diagnosis was depression and kept out all visitors. He “slept as much as [he] wanted for the first time in a long time” and found himself recovered in two weeks’ time. For Kobayashi-san, depression was apparently a case of work-related exhaustion or burnout, for which a cure (with a generous, paid sick leave) was readily provided. In such ways, the psychiatric master narrative of work-induced depression was the unifying theme of the men’s narratives I heard. The uniformity seemed to emerge by the time patients had gone through psychiatric treatment, which suggests that patients’ narratives are coproducts of their own reflection and psychiatric persuasion (Barrett 1996). In the everyday psychiatric practices I observed, I often saw patients provided by psychiatrists with a reassuring narrative about an inevitable breakdown from stress. Psychiatrists did this by first systematically cultivating awareness in patients of how fatigued and alienated their bodies had become, thereby shifting patients’ attention away from their psychological torments. They reminded patients of their normative personality as well as the social

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predicaments that had driven them to the edge, thereby illuminating patients’ victimhood. In so doing, psychiatrists seemed to achieve what biomedicine has always done best – distancing the afflicted from the self-blame and moral responsibility to which they might otherwise be subjected (Sontag 1978). This physiological model of depression as a product of stress and fatigue provided justification for somatic-based treatment involving medication and rest, and helped prevent both doctors and patients from having to commit in-depth psychological explorations. Many of the psychiatrists I talked to emphasized that for the people with melancholic premorbid personality, psychological probing with the aim of examining their internalized value system would be too threatening. This would risk diffusing the nature of their depression, furthering patients’ sense of vulnerability and fostering excessive dependency (Yoshimatsu 1987). Thus, they seemed to generally adhere to the popular principle of treatment formulated by an authority on depression, Kasahara Yomishi, who emphasized that the depressed were well-adapted people to begin with, and the aim of the treatment should not be to question or change their way of being but rather to help them return to the way they were (Kasahara 1978). Some men did, however, deeply reflect on the nature of their illness – particularly after they had suffered chronic or repeated forms of depression – and elaborate on how their work stress came to be closely entangled with problems beyond the workplace. Kobayashi-san, for example, had come to regard depression not only as a temporary sign of work stress but an embodiment of the growing contradictions in his life. He said that at the time he became depressed, he had just found out that his wife had joined the Jehovah’s Witnesses. “I hadn’t realized how distressed she had been about everything, especially about how to bring up children. I was far too busy with my work to notice her distress, and when I found out I was thrown into a panic.” His wife now insisted on new ideas about child rearing and refused to tend to his family grave (regarded as an important act for preserving the continuation of the family). As his life began to crumble both at work and at home, Kobayashi-san was forced to confront the fact that his personal aspirations were causing strain in his life. His reliability at work and unfailing consideration for others had certainly won him many supporters, but Kobayashi-san felt he was always “trying to cover up [his] lack of ability” by maintaining smooth relationships on all sides, for instance writing five hundred

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New Year’s cards every year. He realized how this way of being had thoroughly exhausted him. What went through his mind when he imagined himself jumping out of a window, he said, was the fear that he would make an irreversible mistake on the job and would be “destroyed.” Like other male patients, Kobayashi-san gradually recovered with the help of his family and the protective relationship that the psychiatrist offered him. Doctors often consciously assumed a supervisory relationship with these depressed men, ordering them rest and determining when they returned to work (Yoshimatsu 1987). Kobayashisan fully trusted the doctor’s decisions. The men I interviewed seemed to find a sense of comfort and security in such relationships, as they recovered by readily yielding themselves to the power of psychiatrists, whose benign shelter helped them nurture their impaired sense of self. Meanings of Depression Should work then be seen as a kind of a cover story that some men used to simplify the cause of their depression? Though the psychiatric master narrative that emphasized overwork certainly functioned as what a veteran psychiatrist called “a generic narrative” of depression, the men I met seemed to genuinely regard work as the overarching theme and the deep root of their problems. Their narratives suggested that because they had become so united with their work, and work occupied most of their waking hours, the slightest discord with the workplace could open up an abyss that could destabilize their sense of self, even threaten their existence. No one else elaborated upon this sense of impasse as eloquently as Takashima-san, a forty-nine-year-old banker with a courteous, gentle manner. Takashima-san began to talk about his depression first as a product of alienation in the workplace. In the wake of the student movement of the 1970s he graduated from an elite university where he had studied Marxist economics. Instead of pursuing his dream of becoming a lawyer who would fight for the socially weak, Takashimasan followed his parent’s wish and joined a local bank. He was put in charge of loans in an area known as a publishing hub, where each shop specialized in a single process of book production, such as binding or page trimming, and where livelihoods were at the mercy

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of the mega publishers who controlled these tiny firms. Seeing real life exploitation led him to start reading more books on economics than he had in college. Takashima-san became depressed at what seemed like the height of his career, when he was transferred to help establish a foreign exchange division. Working under a boss who was sent from a powerful bank known for its spartan culture, Takashima-san began to routinely leave home at 6.30 a.m. and work till 2 a.m. in order to keep up with the new work demands. The boss would often criticize Takashima-san in front of others, however. He would hit the desk with the document Takashima-san had prepared and, disparaging him, toss the paper into the air. “I can’t forget that sound of the paper hitting the desk, ‘bang, bang.’ That’s when I began to go wrong. He imposed his own style on me … I totally lost confidence and began to wonder what I was doing.” Up to this point, Takashima-san’s narratives sounded typical of the other depressed men I interviewed. Yet, just when I thought I had grasped the cause of his depression to be work stress, Takashima-san suddenly said, “[his] wife was another reason” for his depression. They never got along because their ideas about childrearing were incompatible. As his wife refused to divorce him and was living upstairs and he downstairs in the same house, he found himself in limbo: “I love my children. I can’t stand it when my wife yells hysterically at them.” Feeling cornered both at work and at home, he said that the only time he felt tranquillity was when he would contemplate the intricate details of how to commit suicide. Discussing a number of failed suicide attempts he had made, he told me how he wanted to achieve peace of mind by “finding the absolute meaning for [him] self.” I can think of the reasons and solutions [for my depression] but I can’t actually carry them out. I’m forever analyzing my plight. You know the hardest working people are not necessarily the most rewarded … There were many folks who went through tough times in the rise of the agricultural revolution or the industrial revolution. How did they find the strength to survive that? As these men’s agonies were so much determined by work, one might wonder why they did not simply quit the job and find

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something else. As Thomas Rohlen once described with regard to the life of Japanese bankers, however, quitting work in a society where life employment is still the norm is an anomaly that people feel should not happen (Rohlen 1974). Though this way of thinking has been changing since the recession of the 1990s, losing lifetime employment had long been comparable to social death. This deep fear was evident in the depression support group that I attended. The discussions these men engaged in more than half the time centred on their worries over how to hold onto their job. To the new members on sick leave who expressed their desperation to get back to work, veteran members would caution them that a rushed return would likely result in poor performance, which could further damage their employability and exacerbate their depression. While dreaming of a full recovery by finding an alternative self elsewhere, few men dared to leave that system and the security it provided. And those on long-term sick leave would often express their constant anxiety (and accompanying risk of shame) of being spotted by their neighbours in broad daylight, when “decent men” are supposed to be at the office, working. Their being bound to the workplace was, it seemed, both a blessing and a curse for these men, as they seemed unable to envision a life outside the system with which they had long been complicit. Letting Go Depression thus represented a liminal space, where excessive selfquestioning into its cause and meanings could lead these men out of the orbit of well-ordered company life. Some of the men, however, seemed to reach – through their struggles – what could only be described as a philosophical resignation. This was the case with Machida-san, a sixty-three-year-old former managing director of a construction company, who was – at the time of my interview – cleaning toilets for a living. Until a few years before, he had been running a successful company with his brothers. As the company struggled to survive after the bursting of the bubble economy, Machida-san’s elder brother died from a cerebral infarction. His younger brother soon sank into alcoholism, dying from liver damage. Scrambling for funds and worrying about being able to pay employee salaries at the end of each month, Machida-san hardly realized the changes happening to him, but he was losing energy,

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concentration, and sleep. By the time he filed for bankruptcy, he was drinking heavily and was severely depressed. After losing everything – his company, employees, his savings, and his house – Machida-san was now, he said, “satisfied” with his simple life. He spoke with feeling about how his family supported him throughout the hardship, and how that kept him from committing suicide. He was, “thankful that [he] had a job [he] could do every day,” and said that, since the job he had was something that no one else wanted to do, he found it meaningful to be able to engage in the work of “cleaning and removing the taint.” Then, almost as if he were delivering a Buddhist sermon, Machida-san intoned how “human beings become tainted from daily living, how life is constant suffering.” His words are intriguing in light of the fact that Shimoda originally termed the melancholic premorbid personality shûchaku kishitsu. Shûchaku is etymologically a Buddhist term, translated from Sanskrit, which refers to obsession, adherence, tenacity, and delusional attachment (Hirasawa 1966, 49–52).3 Though Shimoda himself did not moralize the nature of the melancholic or promote psychotherapy to change the way patients are, except to draw attention to their tenacious attachment to work, his use of the Buddhist term to describe the underlying pathology of the depressed seems to implicitly point to a certain path toward recovery – that is, the idea that letting go of worldly obsessions and desires would bring one to inner tranquillity. Machida-san’s indigenous philosophy of recovery also resonated with what I heard from other depressed men I met in the depression support group. These men articulated how they came to realize, after years of battling with depression, that they could not do anything but relinquish control. Indeed, the mantra that had naturally emerged from the group was, “Focus on your depression here and now … Immerse yourself in depression (utsu ni doppuri tsukaru).” The group shared the understanding that the depressed tended to be the ones who “borrowed trouble” by worrying about things over which they had no control. Others emphasized how their desire to be in command had made them blind to how embedded they were in social relationships. Depression, they said, forced them to confront their own weakness and abandon the desire to be in control, a point I repeatedly heard from other men I interviewed. Recognizing their own limitations, some of these men seemed to reach a philosophical height that brought them a kind of inner freedom.

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W o m e n ’ s D e p ressi on In sharp contrast to the culturally evocative, sympathetic portrayal of overworked salarymen in popular discourse, until recently, no clear master narrative had existed for female depression. To an extent, this seemed also to be the case in medical discourse. While psychiatrists certainly pointed out the depression of housewives and the increasing number of young female patients, they remained much less eloquent about the plight of these women. As some psychiatrists I interviewed noted, because women’s symptoms “lacked clarity of shape” and took “heterogeneous forms,” their depression “defied easy classification.” Perhaps reflecting the lack of a psychiatric master narrative, the women’s narratives usually lacked a straightforward and uniform storyline that men’s narratives often had. Instead, women’s narratives characterized three types of lack: a lack of social and medical recognition, a lack of trust in medical professionals in general, and a lack of certainty in the meaning of their depression.

L ac k o f R e c o gni ti on Many of the women I interviewed began their narratives by describing their desperate search to have their pain recognized by others. This was the case with Endo-san, a fifty-nine-year-old director of a childcare centre, whose gentle yet restrained manner seemed to accentuate the quiet agony she suffered. Asked how her illness started, Endo-san recalled that she began to experience menopausal symptoms in her forties, which also came to affect her mental state after she turned fifty. She lost interest in everything, did not want to see anyone, and felt too dull to get up in the morning to go to work. The lack of understanding on the part of her family further intensified her desperation: “Their innocent words hurt me, when they say things like why don’t I go for a walk [to cheer herself up]. I guess it’s no use expecting them to understand since they have never experienced it themselves.” She sought out various doctors and had numerous tests for the “heavy lead in the chest.” By the time she was referred to a neurologist, she had been driven to believe, like many of the women I met, that her ailment was incurable and suicide might be the only option to get away from it: “The pain was so bad that I scratched the tatami mattress in agony … I grabbed the sleeve

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of the doctor’s white coat and begged him to do something about it, to please let me be hospitalized.” Such a persistent failure of recognition – not only from families but also from medical professionals – was a theme that predominated the narratives of the women I interviewed (cf. Lock 1987, 1991, 1993; Borovoy 2005; Todeschini 1999). I remember being taken aback by the harsh tone of a seemingly docile woman I met at a small clinic, who said, “My doctor listens to me all right but I have my doubts to what extent he really understands. I wish he could experience this pain himself so he would know how awful it is.” Many women described how their symptoms were dismissively treated by various doctors as either “undiagnosable,” and therefore not “real,” or more commonly diagnosed as a “disorder of the autonomic nervous system” (jiritsu shinkei shicchôshô) – a taxonomic category often used as a catchall diagnosis for nonspecific symptoms (Rosenberger 1992). Asked why female depression seemed so difficult to diagnose, some psychiatrists suggested that these doctors’ failures to spot the underlying depression might have to do with the way women often gave complex, heterogeneous somatic complaints. When asked what she thought was the cause of her depression, Endo-san began to explain how, at the time of her depression, she was being swept away by a series of hardships. In the nursery, cooking staff and nursery staff had a major conflict in which Endo-san had to intervene as an intermediary. At home, her sister moved in with her after her daughter’s husband’s business went bankrupt. Endo-san, who was the guarantor for his business, suddenly found herself with a huge debt. While she seemed to shoulder the entire burden without much help from her husband, her son – who had been the source of her support – married and moved out of her house, which intensified her feelings of loneliness: “I was so exhausted every day that I couldn’t shake off the feeling of tiredness at the end of the day.” Such narratives reflected the way women’s lives are segmented into different roles with competing demands. Yet, their emphasis on their complex domestic and emotional problems may have made their depression appear more psychological in origin, which I suspect had led doctors to treat them with less urgency and concern. That is probably why, even in apparent cases of stress and overwork – accumulated both at work and at home – women’s complaints lacked, to the eyes of the family and general practitioners, the

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clear shape of work-induced depression that a burned out salaryman would be able to present, for instance, simply by stating his hours of overwork. In other words, what might have been at play here were not only cultural constructions of gender and the differential values placed on business (public) versus domestic (private) work but also biological disease versus psychological distress. Indeed, internists and psychiatrists seemed to hold moral – and implicitly gendered – orderings of different kinds of depressions, which might have influenced the way they treated female depression. In the clinical practices I observed, psychiatrists acknowledged women’s stress in domestic spheres and rarely played down the significance of their emotional labour. They broadly interpreted the notion of overwork to include women’s hardships and kept telling women how they overstretched themselves. Yet, psychiatrists also emphasized among themselves the traditional distinctions between what they considered a biological form of depression (called endogenous depression) and a psychologically caused depression (called neurotic depression) and treated the latter more dismissively. This psychiatric ordering of soma over psyche seemed to clearly underline the experience of Nagano-san, a forty-nine-year-old librarian, who had been working for the city library system. Her depression began five years ago, she said, when she was about to be promoted to a managerial position in the administration. As the nature of her work changed drastically, Nagano-san began to get the shakes at work, lose concentration, and spend many sleepless nights. She sought out an authority in psychosomatic medicine, only to be diagnosed with a disorder of the autonomic nervous system. This diagnosis probably resulted from the fact that she told the authority first about her problem with her husband, telling him that she and her husband’s personalities were incompatible. Nagano-san was confounded when the doctor immediately scolded her by saying, “You shouldn’t be saying things like that,” and began preaching and moralizing. She continued to suffer the same symptoms under his care, while people around her assumed that her ailment was nothing serious. The second doctor she met was a psychotherapist, who bluntly declared, “Your problem is a marital problem.” The third doctor, a psychiatrist, “fluctuated in his decisions according to [her] mood.” He would prescribe whatever increased amount of medication she requested, and she ended up suffering terribly from side effects of the heavy doses. Nagano-san had no idea how long it would take to be cured, or what goals she should be striving for.

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Lack of Trust in Doctors and Quest for a Cure The lack of medical recognition seemed to lead to another lack among women, that is, a general lack of women’s trust in doctors. Many women were explicitly critical of medical professionals. These women’s criticisms seemed to stem in part from their high expectations of doctors and their strong ambivalence towards what they perceived as dependency-fostering medical paternalism. Doi Takeo, in his highly acclaimed The Anatomy of Dependency (1973), argued for the positive values attached to dependency (amae) in Japanese relationships and suggested that the desire for mutual dependency and interrelatedness constitute the core of the Japanese self. Given this reputed importance, it is interesting that these women often explicitly resented such dependency. A number of women recounted how they were encouraged by their psychologically-minded, seemingly empathic doctors to become dependent (amaeru) on them, only to end up feeling betrayed in the end. For example, thirty-yearold Kawano-san described the nine doctors she had seen and how her trust was almost always betrayed: “I think it’s better not to tell them bad things that have happened. What you say comes back to haunt you … and you get hurt in a weird kind of way.” Nagano-san spoke most eloquently about the intricate dynamics of power in psychiatric encounters. She said she trusted Dr Tanaka, her current doctor, because: He never tried to create an absolute relationship, where I would become dependent on him. You know how psychiatrists try to control patients; patients crave it as well because they want to get better easily. But if you get a piggyback ride, then the next thing you want is to be cradled in his arms. Dr Tanaka avoided that; he never stepped into the core of my being. While the men seemed to appreciate psychiatrists’ benevolent paternalism and thrived under their protection, women repeatedly told stories where (even seemingly well-meaning) attempts by doctors to foster dependency appeared to reinforce their sense of powerlessness. Their desperate search for the right doctor thus became a way of recovering a sense of control (cf. Garro 1994; Janzen 1978; Whyte 1997). In some of the unfortunate cases I saw over the years, however, such women risked becoming – in the eyes of medical

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professionals – problem patients, even “personality disorder patients,” leading to a vicious circle of distrust on both sides. Characteristically, these women’s depression was long in healing, in part, no doubt, because the causes – and associated meanings – remained uncertain for the women themselves. Furthermore, their ideas about recovery were divided in two. On the one hand, the middle-aged women sounded strikingly similar to their male counterparts when they talked about the need to relinquish control. Endo-san said that through depression she was released from her “self-imposed pressure” and was now able to “let things go, naturally.” Nagano-san said she used to be “a bit of a perfectionist,” difficult to deal with. Now she was much more easygoing, cheerful, closer to her family, and had more friends than ever: “Recovering from depression, I came to accept my own limitations … I’ve gained the freedom by accepting my imperfections.” On the other hand, the younger women I interviewed did not seem to find the same sense of liberation in such quiet resignation. Still early in their career, they could not comfortably claim the psychiatric master narrative about overwork as their own. Given their unstable job status, their battle with depression was often intertwined with their struggles to achieve a professional identity. And while they desperately searched for a cure, they seemed to be constantly tormented by the fear that their depression might be of their own making – that it might be a disguised form of escape. These tensions were evident in the narratives of Aoki-san, a thirtyfour-year-old woman who entered the workforce full of aspirations and expectations for her career. Her first job was at a publishing company, where she enjoyed the intensity of the work and aspired to become like the experienced senior female staff in the office. However, Aoki-san soon began to experience pain in the back of her eyes and excruciating headaches. Urged by her parents, she quit work and sought out a cure. Repeatedly given the diagnosis of autonomic nervous system disorder, she was eventually referred to a psychotherapist but remained doubtful of the effect of a “talking cure.” “This doctor seemed to think that I would recover if he listened to the anguish of my heart and pointed to the psychological problem at the root. He wasn’t concerned with the pain I was suffering at that moment.” Tormented by the feeling that she was being left behind by others, she kept thinking about what she would do when she turned thirty and “almost felt like killing” herself.

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When she was finally diagnosed with masked depression at a university hospital and prescribed antidepressants her pain “miraculously went away.” However, she soon began to feel the strain of the uncertain nature of her depression. She had recurring symptoms and often wondered where to draw the line between a “real illness that required medical attention” and what was “only a headache.” Similarly, thirty-one-year-old Noguchi-san, who had to abandon her dream profession as a nurse while battling with the illness, spoke of the ambiguity of her depression: “There is a core that is depression, but there are many grey areas around it, like feeling down, being socially withdrawn, not being able to get up in the morning, and being unable to go to work.” The uncertainty of a psychiatric diagnosis seemed to torment many women I met. Thirty-year-old Kawano-san, who stayed home after graduating from a prestigious university, talked about her frustration with not having a career and expressed doubt about her own depression: “I don’t know if I became sick because I wanted to become sick and so created the illusion that I was sick.” Given the polymorphic symptoms and the lack of a ready diagnosis, these women seemed torn between their desire to have their depression legitimized and their doubts about the nature of their ailment. These women’s uncertainty may also have been intensified by the doubts that psychiatrists expressed over the authenticity of their depressions. I often encountered psychiatrists being frustrated with the increasing number of people coming to see them for what they dismissively called “self-proclaimed depression.” Psychiatrists working in the 1970s had previously discussed similar types of patients increasingly seen in clinics, whose illnesses were said to differ from traditional types of endogenous depression. They named such forms of depression as “escaping depression” and “immature-type depression.” The patients they discussed at the time were often young salarymen whose depressions seemed only to worsen when they had to work. These young workers, in the eyes of these psychiatrists, lacked the same sense of traditional Japanese work ethic and thus remained a deviation from Shimoda’s model of the depressed. With the introduction of selective serotonin reuptake inhibitors and a new wave of depression patients in the 1990s, psychiatrists were again confronted with the question of who had a true depression and how to distinguish true (biological) depression and a mere (psychological) depressive state. While psychiatrists often problematized the personality of

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the latter types of patients, such discourses were dangerously moralizing. Particularly for stay-at-home, “unproductive” women, diagnoses lacked the moral certainty of the true depression of overworked salarymen. Lacking the culturally fitting terms to articulate their plight, women did not, and could not, discuss their pain as a public product of structural injustice as some men did but attributed it largely to private matters. The struggles of the young women discussed here may be a prefiguring of what is more broadly to come for all Japanese, however, who face the increasing uncertainty of their place in the work force. Lifetime employment and the seniority system, which had characterized the post-war employment system and set the basis of public life, have begun to crumble. Younger people are facing the risk of unemployment in the emerging society; though this means they do not have to endure the suffocating sense, as the older generations did, of being bound to an organization that seeks to act as their benevolent family (Rohlen 1974). Younger women caught in this transition cannot seem to settle for a kind of quiet resignation and acceptance of their place in society. Their experience of depression remains intricately intertwined with – and invested in – the question of their professional identity. The family no longer seems to serve as the major source of psychological fulfilment that it once did (see Lock 1993). It thus seems to me that the increasing public attention to depression should not be naively celebrated as an advancement in health care but has to be carefully examined in light of the legal, social apparatus that have legitimized – indeed necessitated – the move to make both depressed men and women the agents of their management and more “productive” citizens (Rose 1990). The amount and variety of information now being disseminated telling both men and women how to treat their depression and how to demand public responsibility reflects an era of disillusionment, where workers have to watch out for themselves when corporations may no longer provide them with security. In this context, the local indigenous notion of recovery as relinquishing control may no longer provide these people with the same kind of liberation as it seems increasingly at odds with the global “Prozac Narrative” evident in medicalization. As Jonathan Metzl (2003) points out, the Prozac Narrative is a “productivity narrative,” which urges people to take pills and to bring out assertiveness and competitiveness, enhancing their ability even beyond their limits in order to take control of their lives. The younger

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women discussed here certainly seem to sense underlying tensions evoked by this psychiatric expansion. They thus draw upon psychiatric diagnoses to demand care and recognition for their pain, while toying with troubling suspicions about the unseen consequences of compliance and potential risks for subjugation (Lock 1993, 1998, and 1999; Mol and Berg 1998). They seem to remain uncertain of what kind of treatment this will ultimately bring.

D is c u s s io n : T h e P o l iti cs of Causali ty in D e g e n d e r in g Depres si on This paper has suggested how the Japanese psychiatric master narrative about depression may have produced uneven hegemonic effects on men and women. On the one hand, it is striking how Japanese psychiatrists have created powerful and sympathetic descriptions of depressed men about how, for instance, their self-sacrificing devotion to a company is no longer rewarded in the crumbling system of life employment. As if to reflect this psychiatric master narrative, depressed men mainly discussed their depression as caused by work stress, some explicitly linking their personal ailment with a recognizable form of collective pain. They seemed to recover by submitting themselves to the familiar, protective relationships with psychiatrists and by accepting the psychiatric diagnosis of depression that provided, particularly for these overworked men, an institutionally legitimized form of temporary escape. On the other hand, this psychiatric master narrative has created a curious void in the Japanese understanding of female suffering, bringing about real-life consequences on women’s subjective experiences. Women rarely attributed their suffering to straightforwardly recognizable structural causes of depression. Instead, they seemed to place their resistance more explicitly on medical paternalism, criticizing the kind of clinical encounters that they saw as reinforcing their own sense of powerlessness. These women’s persistent quest for the right doctor thus became a way of gaining a sense of control. Lacking public legitimacy for their depression, some of these women were tormented by the fear that their illness might be a prolonged – even self-defeating – form of escape. In such ways, the experience of depression – as well as the kind of reflexivity that it brings – takes on different forms according to gender, because the nature of social suffering is structured differently by gender.

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This may be changing with the global move to degender depression.4 While male depression is rapidly gaining a new sense of urgency in North America, in Japan, where depression has long been linked to men at work, it is women who are now bombarded with information designed to make them aware of their hidden depression. As general practitioners and psychiatrists are adjusting their own assumptions, women who might have gone undiagnosed before are now more likely to seek and receive medical care. Some women are actively resorting to the emerging system of social security whereby depression is increasingly recognized as a work hazard and a legitimate reason for economic compensation. The fact that women are more visible in the public realm of work is helping to instil the awareness that depression can afflict both men and women, bringing, somewhat ironically, gender equality to the realm of psychic suffering. As the gender representations of depression begin to shift, how will this affect the politics of causality? Contrasting the discourses on menopause in North America and Japan, Lock has demonstrated that, despite the biomedical insistence on the body universal, the making of female maladies is in no way a uniform process. In particular, Lock has illuminated the moralized discourse about female fragility in North America that has served to pathologize women by emphasizing their inherent biological vulnerability, which also long underlined the gynaecological discourse. While a similar discourse about female vulnerability seems historically much less pronounced in Japanese medicine (for reasons that remain to be investigated), I am also tempted to ask to what extent the peculiarly socializing discourse about the cause of depression in Japan owes to the fact that depression has long been treated as a male malady in Japanese psychiatry. In other words, can it be that Japanese psychiatry’s rather sympathetic discourse about the depressed – which has often emphasized social stress over individual vulnerability – is, after all, a product of traditionally masculinized understanding of depression? And if so, as women are attracting more psychiatric attention, will they receive the same kind of master narrative from psychiatry that has done so much to legitimize male suffering? Or, as some feminist critics in the West have expressed, will these women find that psychiatry simply pathologizes them by urging them to take pills without fully understanding their social predicaments? Perhaps the question that needs to be carefully examined in the years to come is how psychiatry, in conjunction with the new legal system that recognizes depression

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as a work hazard, can provide an alternative framework for understanding complex causes of depression as it attempts to go beyond the monolithic dichotomizing of the social versus the biological.

no t e s 1 Adapted from Depression in Japan: Psychiatric Cures for a Society in Distress by Junko Kitanaka. Copyright © 2012 by Princeton University Press. Reprinted with permission. 2 The names of the patients and psychiatrists are pseudonyms. 3 The character shû is made up of the figure of a person whose hands are shackled, thereby symbolizing a criminal, captured, in this sense, in delusional attachment. 4 The centrality of work as the perceived cause of depression is not limited to Japanese men. A study on depression in Europe has also shown that, while women were, “characteristically more distressed by relationship problems and illness or death in the family,” men “more frequently attributed the onset of depression to problems at work and unemployment” (Angst et al. 2002, 205). What may be distinctive in work stress in Japan is the extent to which work stress has been highlighted, both in popular and medical discourses, as the legitimate cause for depression.

R e f e r e n ce s Angst, J., A. Gamma, M. Gastpar, J.P. Lepine, J. Mendlewicz, A. Tylee. 2002. “Gender Differences in Depression. Epidemiological Findings from the European DEPRES I and I I Studies.” European Archives of Psychiatry & Clinical Neuroscience Vol. 252(5): 201–9. Barrett, Robert J. 1996. The Psychiatric Team and the Social Definition of Schizophrenia: An Anthropological Study of Person and Illness. Cambridge: Cambridge University Press. Borovoy, Amy. 2005. The Too-Good Wife: Alcohol, Codependency, and the Politics of Nurturance in Postwar Japan. Berkeley: University of California Press. Doi, Takeo. 1973. The Anatomy of Dependence. Tokyo / New York: Kodansha International. Garro, Linda C. 1994. “Chronic Illness and the Construction of Narratives.” In Pain as Human Experience: An Anthropological Perspective, edited by Mary-Jo Delvecchio Good, Paul E. Brodwin,

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Byron J. Good, and Arthur Kleinman, 100–37. Berkeley: University of California Press. Hirasawa, Hajime. 1966. Keishô Utsubyô no Rinshô to Yogo [Clinical Practice and Outcome of Mild Depression]. Tokyo: Igaku Shoin. Jack, Dana Crowley. 1991. Silencing the Self: Women and Depression. Cambridge, M a: Harvard University Press. Janzen, J.M. 1978. The Quest for Therapy in Lower Zaire. Berkeley: University of California Press. Kasahara, Yomishi. 1978. “Utsubyô no Shôseishinryôhô” [Brief Psychotherapy for Depression]. Kikan Seishinryôhô [Japanese Journal of Psychotherapy], Vol. 4(2): 6–11. Kawakami, N., T. Takeshima, Y. Ono, H. Uda, et al. 2005. “Twelve-Month Prevalence, Severity, and Treatment of Common Mental Disorders in Communities in Japan: Preliminary Finding From the World Mental Health Japan Survey 2002–2003.” Psychiatry and Clinical Neurosciences 59(4): 441–52. Lock, Margaret. 1987. “Protests of a Good Wife and Wise Mother: The Medicalization of Distress in Japan.” In Health, Illness, and Medical Care in Japan: Cultural and Social Dimensions, edited by E. Norbeck and M. Lock, 130–57. Honolulu: University of Hawaii Press. – 1991. “Flawed Jewels and National Dis / order: Narratives on Adolescent Dissent in Japan.” The Journal of Psychohistory 18(4): 509–31. – 1993. Encounters With Aging: Mythologies of Menopause in Japan and North America. Berkeley: University of California Press. – 1998. “Perfecting Society: Reproductive Technologies, Genetic Testing, and the Planned Family in Japan.” In Pragmatic Women and Body Politics, ed. Margaret Lock and Patricia Kaufert, 206–39. Cambridge: Cambridge University Press. – 1999. “Genetic Diversity and the Politics of Difference.” Chicago-Kent Law Review 75(1): 83–111. Metzl, Jonathan. 2003. Prozac on the Couch: Prescribing Gender in the Era of Wonder Drugs. Durham: Duke University Press. Mol, A.M. and M. Berg. 1998. Differences in Medicine: Unraveling Practices, Techniques, and Bodies. Durham and London: Duke University Press. Naka, Shûzô. 1932. “Shorôki Utsuyûshô” [Senile Depression]. Shikeigaku Zasshi [Journal of Neurology] 34(6): 53–77. Nakane, Yoshibumi, James Ballenger, Yoshifumi Koshino, Toshihiko Kinoshita, Mark H.B. Radford, and Keh-Ming Lin. 2004. “Utsubyô

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oyobi Fuan Shôgai ni okeru Bunka no Eikyô” [Cultural Influences on Depression and Anxiety Disorders]. Nihon Iji Shinpô 4179: 27–32. Pinguet, Maurice. 1993. Voluntary Death in Japan, translated by Rosemary Morris. Cambridge: Polity Press. Rohlen, Thomas P. 1974. For Harmony and Strength: The Japanese WhiteCollar Organization in Anthropological Perspective. Berkeley: University of California Press. Rose, Nikolas. 1990. Governing the Soul: The Shaping of The Private Self. London / New York: Routledge. Rosenberger, Nancy R. 1992. “The Process of Discourse: Usages of a Japanese Medical Term.” Social Sciences and Medicine 34(3): 237–47. Shimoda, Mitsuzô. 1950. “Sôutsubyô ni Tsuite” [On Manic Depression]. Yonago Igaku Zasshi [Yonago Medical Journal] 2(1): 3–4. Sontag, Susan. 1978. Illness as Metaphor. New York: Farrar, Straus and Giroux. Todeschini, Maya. 1999. “Illegitimate Sufferers: A-bomb Victims, Medical Science, and the Government.” Daedelus 128, no. 2: 67–100. Whyte, Susan Reynolds. 1997. Questioning Misfortune: The Pragmatics of Uncertainty in Eastern Uganda. New York: Cambridge University Press. Yoshimatsu, Kazuya. 1987. Isha to Kanja [Doctors and Patients]. Tokyo: Iwanami Shoten.

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5 From Spasmophilia to Social Phobia: Conversions of French Anxiety Stephanie Lloyd

D is c ov e r in g D i sorders In the 1940s, a disabling syndrome was identified in France. This disorder, spasmophilia, which literally means “to like spasms,” was characterized by a range of symptoms including muscular spasms and hyperventilation, as well as cramps, convulsions, loss of memory, insomnia, migraines, stress, anxiety, the “neurotic triad” of hypochondriasis, depression, and hysteria, and other personalized symptoms (Durlach and Bara 2000, 98–9 and 129). The condition was believed to be linked to a magnesium deficiency and sometimes to a calcium imbalance, depending on the specialist consulted. Rarely identified elsewhere, spasmophilia was a recognizable culture-bound syndrome frequently diagnosed within France. The diagnosis rate of the disorder rose over time and increased sevenfold between 1970 and 1980 alone (Saunders 2000). By 1982, the clinical test for spasmophilia was the twenty-ninth most commonly performed procedure in France, and spasmophilia was diagnosed as frequently as hearing problems (Payer 1988). The condition became the subject of more than twenty popular books and hundreds of scientific articles and medical textbooks. The French took magnesium supplements by the millions and drank litres of magnesiumrich water. The relationship between minerals, anxiety, and tension became widely accepted.1 However, spasmophilia virtually disappeared in the 1990s. More specifically, clinicians informed their patients that the disorder never

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existed, acting belatedly on scientists’ claims to this effect (Gayda and Vacola 1982; Numera et al. 1979; Segrestaa 1981). Although opinion was not unanimous, a general consensus had been reached in French medicine that spasmophilia had become, and perhaps had always been, a catchall term for a variety of somatic and psychological complaints that were better treated using other diagnostic labels (Horenstein 1986; Sidoun et al. 1989; Serra 2003). For the “spasmophiles” of France, the rejection of spasmophilia by the medical community pulled the rug out from under their feet and left them uncertain about the cause of their unrest and how it should be addressed. Despite the recantation of the category by the medical community, some French citizens continued to identify themselves as spasmophiles and take mineral supplements despite professionals’ avowals of the nonexistence of the category and the futility of their interventions. However, many other people turned away from their diagnosis, either as a result of the failure of spasmophilia treatments to improve their condition or because the disorder had ceased to “exist.” They turned to newer or different diagnoses to explain their problems, one of which was social phobia, or social anxiety disorder. Social phobia, like spasmophilia, is linked to a biological predisposition and associated with extreme shyness, fear of judgment, and anxiety related to social and performance situations. Like spasmophilia, social phobia converts experiences of anxiety, nerves, and somatic reactions to stress into a cohesive disorder founded not on social, individual, or interpersonal factors but on chemical imbalances. The medicalization of anxiety has been of great interest to medical anthropologists who have analyzed the moral, social, and political factors involved in the complex process by which particular biomedical knowledge and practices gain legitimacy, and come to shape individuals’ identities and their relationships with the world around them. Margaret Lock charted early territory in this area in her work on nevra, a condition documented among Greek women who immigrated to Canada as adults, and characterized by fear that they would “boil over” or lose control (1990). In particular, she explored the complexity of women’s negotiation of the medical terrain as they oscillated between seeking recourse within the legitimizing effect of medical rhetoric and attempting to find the space to decry the social and economic conditions that lead to nevra. While the women whose experiences Lock analyzed were cultural transplants coping with new challenges in their adopted homeland,

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in other cases people do not require a cultural uprooting to feel out of step with the social order. The individuals whose experiences I focus on in this essay feel alien within their native culture and unable to live up to social expectations and norms. They willingly trade meaning-infused metaphorical understandings of illness (Kirmayer 1992) in their illness narratives for an objective and scientific disorder label largely shorn of social and personal significance. In this essay, I examine what it means to leave behind one’s medical identity and become another person: that is, to see oneself as suffering from a condition associated with a different explanatory model, range of symptoms, and treatments. In doing so, I focus on the many past and present spasmophiles who have come to identify and refer to themselves as “social phobics.” People suffering from these conditions tend to experience a wide variety of anxiety symptoms that have been serially attributed to many diagnoses throughout their lives. However, they have tended to identify most closely with spasmophilia and social phobia out of all of the possible labels. Among the choices available, these labels were often the most grounded in biology. Their narratives express a desire to adopt legitimate, nonstigmatizing accounts of their diffuse anxieties, accounts that provide them with a safe place from which they can call attention to the social and personal factors they believe are implicated in their conditions. In this essay, I first contextualize spasmophilia and social phobia, describing the process through which these categories came to be naturalized and objectified by French physicians and patients. I then draw on the words of these same physicians and patients to explore the complexity of medicalization as it relates to the diagnoses and their ambivalence about engaging in the process of medicalization.

Ch a m p io n in g B io m e d i cal Categori es For a diagnostic category to become widely adopted and well recognized, particular assemblages of biomedical knowledge and practices must become valued within their biotechnical and cultural contexts (Lock and Nguyen 2010). This process often requires the support of key actors and institutions, and is particularly noticeable in the competitive arena of anxiety symptoms, where multiple labels are often available to an individual with the same range of symptoms or experiences. This breadth of options is linked to the substantial investments

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that have been made in recent years to promote information about anxiety disorders and their treatments to physicians and patients in North America (Arney and Rafalovich 2007). In spasmophilia’s rise, new scientific knowledge was supported by historically specific beliefs about healing and resonated with an audience of physicians and patients eager for a new model of anxiety. The disorder particularly benefitted from the support of several strong promoters.2 One was Professor Henri-Pierre Klotz3 who first described spasmophilia in 1948 and subsequently published widely on the disorder, including the well-received popular book Être spasmophile et bien portant (Being a spasmophile and living well [1983]). His work raised the profile of mineral imbalances in France and resulted in magnesium being considered a vital mineral to monitor in the maintenance of one’s health.4 Other professionals contributed to increasing interest in spasmophilia, for example, French neurologist Dr Henri Rubinstein’s book Êtes-vous spasmophile? (Are you a spasmophile? [1981]) sold more than 60,000 copies in the first four years following its publication (Cathébras 1994). Klotz’s student, Professor Jean Durlach, built on this foundation. Durlach founded the Magnesium Research journal as well as the International Society for the Development of Magnesium Research. Durlach communicated primarily via professional publications, arguing for the importance of sufficient magnesium intake to prevent a vast array of medical difficulties. Durlach’s work further established the importance of magnesium within the French medical community and contributed to physicians’ surveillance of their patients for magnesium related problems. Durlach, to a certain extent, avoided the term spasmophilia in favour of the term tétanie latente (which translates as latent tetany and refers to spasms elicited by specific stimuli), a term he used to define the effects of a magnesium deficiency in a more circumscribed manner. He chose this label because he shared the opinion of many French physicians that spasmophilia had become a catchall term for a number of functional and nervous conditions.5 Despite Durlach’s ambivalence toward the label spasmophilia, the diagnostic label became well recognized among lay people and medical professionals. The scientific explanatory frameworks were appealing to physicians and patients alike. The desirability of the explanation and the fact that the treatment built on existing French valorization of the healing properties of minerals, mineral waters

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(Weisz 2001), and médecine douce (alternative medicine) facilitated the acceptance of spasmophilia into French medicine and society. Social phobia, like spasmophilia, had to find a legitimate and valued place within French medicine, science, and culture in order to be adopted. As was the case with spasmophilia before it, social phobia6 provided a relatively nonstigmatizing account of individual anxiety. Further, it was consistent with what were considered cutting-edge understandings and best treatments of mental illness, placing France in line with increasingly globalized psychiatric knowledge and practices. Social phobia’s association with this globalized and standardized psychiatry facilitated its adoption because it responded to the preoccupations of French physicians and scientists who were, at the time, eager to adopt internationally accepted and scientifically validated concepts and practices (Coffin 2009). Social phobia was also heavily promoted by a number of French psychiatrists who practise cognitive and behavioural therapy (C BT ). These clinicians had a vested interest in the category. For them, social phobia – recognized as a condition responsive to C B T – was a means of spreading awareness about their therapeutic orientation, which had not been readily accepted in France. The cognitive and behavioural framework had trouble breaking through the dominant psychoanalytic perspective. A Parisian psychiatrist, Christophe André, remains a powerful advocate for the acceptance of social phobia, C B T, and attention to self-esteem. He and a handful of other like-minded psychiatrists published a large number of popular articles and books (see André and Légeron 1995a; André and Lelord 1998; André and Muzo 2002) and professional essays and texts (see André and Légeron 1995b; Lépine and Pélissolo 2000; Pélissolo et al. 2000; Pélissolo and Lépine 1995). They were successful in converting a significant, and growing, proportion of medical professionals and the general public to their point of view. They view social phobia as a condition for which patients have a biological predisposition that can be triggered by stress or unsettling life events. Their approach emphasizes the importance of directive psychotherapy in which patients’ “irrational” cognitive and behavioural patterns are challenged (Beck 1976). Selective serotonin reuptake inhibitor (SSR I ) antidepressants are central to the treatment they recommend. The psychoanalytic model remains strong in France and does not favour the acceptance of social phobia. The diagnosis is incompatible

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with the psychoanalytic framework (see Lloyd 2006), but interest in a new therapeutic model has increased the legitimacy of social phobia and its cognitive and behavioural framework. In the cases of both spasmophilia and social phobia, professionals have staked their careers on converting the public to their way of understanding anxiety. They have emphasized the commonsense and scientific aspects of their approach and have reached out to the public in popular publications aimed at the broader public. However, in contrast to spasmophilia, social phobia was promoted by an additional important actor: the pharmaceutical industry. While the producers of calcium, vitamin D, and magnesium no doubt profited from the treatment of spasmophiles, there was relatively little money to be made in this industry without a patentable product. By contrast, the pharmaceutical industry stood to make a great deal of money if social phobia became widely diagnosed and if the recommended medications, SSR I antidepressants (Davidson 2003), were used. The pharmaceutical industry funds a portion of French cognitive and behavioural therapists’ research on social phobia and supports continuing education and medical symposia where physicians are made aware of the danger of overlooking “underdiagnosed” and “undertreated” conditions (GlaxoSmithKline nd).7 These are powerful venues for changing the opinions and practices of doctors; research funding provided to psychiatrists allows for the creation of knowledge and statistics about the prevalence of social phobia in France (Lloyd 2008). Marketing campaigns and newspaper headlines distribute information on the need to treat social phobia, facilitating the adoption of the new medical label (Gauthier 2006; Le Temps 2006; Monnin 2006; Prieur 2006).

C h o o s in g D is orders This essay is based on research carried out during ten months of fieldwork in Paris in 2003–04. During this time, I interviewed more than fifty informants including general practitioners, psychiatrists, and members of a social phobia support group, which I will refer to as Les Phobiques. I also regularly attended Les Phobiques meetings. The perspectives that I present in this essay are particularly Parisian as C B T is not as prevalent elsewhere in France as in Paris and the surrounding region. In the words of Dr Lévy,8 a psychoanalyticallyoriented psychiatrist, a “bloody battle” rages in Paris between

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cognitive behavioural therapists and psychoanalysts for control of the psychiatric system and influence in determining France’s dominant therapeutic orientation.9 The social phobics I interviewed are not representative of all French citizens diagnosed with the condition.10 They are people who have actively sought information about their problems and particularly the category social phobia, often prior to their official diagnosis by a physician. Many members of Les Phobiques actively support the unseating of psychoanalytic psychiatrists in France and do all they can, including speaking and writing in public forums, to promote the adoption of C B T in France and increase the acceptance of social phobia and social phobics (see, for example, Meyer 2005). The perspectives I present, if biased, are nonetheless informative of a therapeutic transition in Paris and provide insight into patients’ spreading awareness of different medical models throughout France, as well as their increasing willingness to contest traditional medical paternalism by self-diagnosis and shopping around for a physician who will diagnose them “properly.” Twenty-five per cent of the present-day social phobics I spoke to were once spasmophiles.11 If the symptoms lists were essentially identical, this would not be surprising. However, in terms of symptoms, the closest modern correlate of spasmophilia is panic attacks or panic disorder. The symptoms and experiences related to social phobia, if traced back in time to the era of spasmophilia, most closely resembled anxiety neurosis. In other words, while there is overlap between the symptoms of spasmophilia and social phobia and if we were only concerned with their symptoms, then past spasmophiles should be present-day sufferers of panic attacks, and present-day social phobics should have been neurotics in the past. But there are other factors involved in diagnostic identification including patient access to physicians and information. These factors are important given the plasticity and high comorbidity of people who suffer from anxiety, as it is often possible for patients and physicians to draw attention to one among many potential diagnostic labels. Epidemiological studies indicate that eighty per cent of people who suffer from social phobia have at least one comorbid anxiety or mood disorder (Rapee and Spence 2004; Sareen and Stein 2000). As a result, the people discussed in this paper are quite likely to have been assigned several diagnostic categories not only consecutively

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but also concurrently. Interestingly, they have often pushed these other labels, such as panic disorder or neurosis, to the side, describing them as useless labels (neurosis) or secondary to their central difficulties (panic disorder). They favour the labels spasmophilia and social phobia.

M e d ic a l iz at io n , Legi ti macy, a n d A vo ida n c e o f t h e Psychologi cal During my interviews with clinicians and patients, it seemed that a preference for the labels social phobia or spasmophilia was derived in part from the relative legitimacy, and more neutral acceptance, of biological versus psychological accounts of medical conditions (see Kirmayer 1988; Kleinman 1982; Lock 1990). By focusing on mineral imbalances, the diagnosis spasmophilia pushed aside psychological explanations. Dr Gitton, a general practitioner with an academic appointment, explained the appeal of categories such as social phobia and spasmophilia as follows: Labels are at the crossroads of several determinants. Spasmophilia is a typical example. It is always easier [for both patients and physicians] to give [a patient] a label of a disease which does not have too many … personal implications or psychological connotations, to [avoid the need to] say: your symptoms are tied to anguish.12 Though these labels are widely used by general practitioners, Dr Gitton is uncomfortable with these diagnoses, going so far as calling them dangerous because of where they orient therapeutic attention: It is not the magnesium in and of itself that is dangerous, it’s the fact that it prevents the patient from understanding what he has by giving him a more or less magic medicine … which is going to be an obstacle to him addressing his real problems. It is not complicated to prescribe some magnesium: “You have that? Hold on, take some magnesium and it will make you better.” With things like that, we avoid taking time … France is a country where we allow time for consultations because, culturally, doctors are educated in that way. But the problem is that behind this you have a

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system of care in which you are paid by the act, which is contrary to the first vision of care. Thus it is always more practical to give some magnesium or do something other than discuss real problems. It is in this sense that [magnesium] is dangerous … because it comforts everybody in the idea of a magical medicine … a medicine that is going to cure the disorder … The problem is not in the medication itself but … what the medicine will prevent [i.e. discussion]. Yet is it precisely this type of conversation that patients are often eager to avoid. In Lock’s work on nevra, she notes that in medical contexts women deflected attention from potential psychological inquiries, wanting their “physical symptomatology dealt with without any excursions into their private lives” (1990, 250). It became clear to Lock that these women at times took recourse in medications to remain in undesirable and unhealthy environments. While social phobia is a mental disorder in which patients’ cognitive and behavioural patterns are believed to exacerbate conditions, analysis of these patterns is not highly personalized or emotionallyladen relative to, for instance, psychodynamic psychotherapy. Analysis of maladaptive cognitions and behaviours is removed from an examination of deep-seated emotions or traumatic experiences. Further, social phobia is considered to have a biological origin. Attention is also turned toward the biological rather than solely the psychological. The now ubiquitously used, if still poorly understood, reference to a “chemical imbalance” (Healy 2004; Mintzes 2006) is often invoked to explain the origins of social phobia. Miss Hébert, the first spasmophile-turned-social phobic I interviewed, who is also the president of Les Phobiques, described the necessity of taking antidepressants to “regulate” what she called her “cerebral hyperactivity.” Most of the social phobics I spoke to pointed to similar biochemical bases for their conditions. My interviewees acknowledged that spasmophilia and social phobia have psychological elements but insisted that they were not ultimately psychological in their origin. For people who suffer or suffered from these conditions, the disorders’ biological underpinnings imply that they have a real condition. The biological models furnish them with a satisfying and convincing account of why they ended up where they are in life, which was usually not the life to which they had aspired (Lloyd and Moreau 2011).

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The concept of disorder resonates with and appeals to spasmophiles-turned-social phobics, particularly the idea that their condition is something external to their essential self, a transitory pathology that can be overcome via cognitive and behavioural training, or by chemical regulation. At the same time, they were eager to prove that their psychological symptoms do not imply madness. Mr Bouvier, a businessman who suffered from social phobia, explained that recourse to a psychiatrist in France is perceived as the equivalent to an admission of “craziness.” His statement was supported by almost all of the social phobics I interviewed. Miss Hébert went into greater detail: There is a perception [in France] that anxiety disorders are dangerous … it’s like we’re in the nineteenth century. People think of the asylums, with people chained up. It’s a strong feeling. There is the idea that we can’t treat these people, we can only protect society from them … There is still that image of danger, of a psychopath. She referred to a World Health Organization statistic reporting one in four people as suffering from a mental illness at some point in their lives. Miss Hébert believes that this figure is “logical,” arguing that mental illnesses can be set off by a variety of factors in life: “To be human is to be … life is fragile, life is difficult. There can be accidents, deaths … anyone can crack.” This does not mean, however, that every one of these people will become a “psychopath,” she underlined. Miss Hébert echoes the views of cognitive and behavioural therapists. She is of the opinion that particular people are vulnerable to mental illness as a result of biochemical factors and that life experiences act as triggers for mental disorders. To her and the other people I spoke with, the biological basis of their conditions, paradoxically, distances them from madness and serious mental illness. This may be due to their faith in medications and therapy to “bring people back” and relieve them of their disorders, offering the possibility that they can one day be “normal.” The medicalization of the states diagnosed as spasmophilia and social phobia, with their presumed biological bases, contributed to these labels being considered less stigmatizing than other labels for anxiety. While it is certainly true that biological diseases – whether

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of brain or body – are subject to stigma (Farmer 1992; Goffman 1963; Kleinman 1988), the people I spoke to were concerned about the stigma of psychologically-based conditions. They considered poorly equilibrated biochemistry less stigmatizing than a flawed personality or self. Like the women suffering from nevra, being diagnosed with a neutral medical condition was preferable to being seen as deviating from culturally valued emotional and behavioural states (Lock 1990). It is not only the explanatory framework and level of interventions, particularly for social phobia, that appealed to the people with whom I spoke. They also appreciated the commonsense approach in social phobia treatments, which were viewed as easily understandable, concrete, and, importantly, oriented toward improved day-today functioning. Spasmophiles and social phobics often compared their current treatment to their past experience with psychoanalytic psychotherapy. Most of my interviewees rejected psychogenic explanations of their problems and described psychoanalysis as ineffective. Miss Hébert was particularly vocal in her critique of psychoanalysis, speaking in her official capacity as president of Les Phobiques: In France, there is a big psychoanalytic influence … There is an intellectual fringe who write about it in journals, who discuss it in the media … [To them] to lie on a couch, it’s great! Whether you get better or not, it’s great. [Their attitude] denies to a certain extent our suffering … People who make an intellectual inquiry in psychoanalysis don’t have a problem. But us, we really suffer. We are handicapped by social phobia, we can’t spend twenty years waiting to be cured … or not … If I compare cognitive and behavioural therapy with psychoanalysis, this is the example I often give: Someone has a car accident and he has seriously hurt his leg and is calling for help. You have two types of help … You have a doctor who arrives, a surgeon, and he wants to operate right away to save his leg. Okay? So, he does all that he can and after there is rehabilitation, etc. And you have someone else who is also there at the accident, and he is interested in how the accident came about. And he wants to know the license plate number of the car that caused the accident. Who had the red light, the priority … And during this time, the man has lost his leg. Me, I think there are priorities, logical priorities, in health

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care. There is health care, real health care, and after, if one wants, if one needs it, one can work more deeply [via psychoanalysis]. She and other members emphasized the need to be functional and criticized the lack of impact that psychoanalysis had on their daily lives, revealing a highly pragmatic approach to medicalization (Lock and Kaufert 1998). They found psychoanalytic psychotherapy to lack the concreteness they desired in a therapy. By comparison, CBT is structured and directive, providing functional results if not profound insight. While the outcome of magnesium and calcium consumption might not have been dramatic, the explanatory framework of spasmophilia nonetheless has a common-sense appeal: that a mineral supplement would treat their mineral deficiency. A similar type of reasoning is applied to SSRI antidepressants for the treatment of social phobia. Sjaak van der Geest, Susan Reynolds Whyte, and Anita Hardon (1996) point to the power of the “thinginess” of medications. By using a thing to treat an illness, a state of dysphoria is transformed into something concrete that can be clearly addressed and which now fits into the logic of biomedicine. The patients I spoke to felt comforted being diagnosed with a specific condition and given a therapy that, in theory, identified a source and the cure for their anxiety. By comparison, psychoanalytic explanations seemed vague and opaque. Dr Lefebvre, a cognitive and behaviourally-oriented psychiatrist, explained the differences between biological psychiatry journal articles and psychoanalytic literature: One of the principal journals … that retains psychiatry in the medical sector [in France] is Encéphale [brain]. It publishes things that are precise and comprehensible. When I read [an article] in Encéphale, I retain what they have written. When I read an article in another journal of psychiatry, so-called traditional psychiatry [psychoanalysis], I have a hard time understanding it. I’m obliged to read it ten times, which I don’t like. I find that very, very unpleasant. Many physicians I spoke to described psychoanalytic theory as too complex and not scientific enough, lacking sufficient proof of its efficacy. This reflects the global trend toward evidence-based medicine (Ehrenberg 2004; Lakoff 2005). The apparent concreteness and organic basis of spasmophilia and social phobia as well as the

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functional emphasis of their treatment render the disorders understandable and relatively easy to promote within medical circles as well as to the lay population and mass media.

T h e “ S o c ia l” in S pas mophi li a a n d S o c ia l P hobi a As biological models of social phobia and spasmophilia avoid delving into psychological or social origins of suffering and discontent, individuals, the state, employers, and society at large are effectively let off the hook for their role in the development of the anxiety. Dr Bouchet, a general practitioner, prefers not to use the diagnosis social phobia for this reason and says she is more likely to look for social and economic vulnerabilities among her patients who fit the disorder’s diagnostic criteria. She suggests that the diagnosis of social phobia becomes untenable if one starts to look into the social factors that may have led to patients’ marginalization. Marginalization, in her view, should not be considered a sickness. Physicians’ goals, instead, should be to address the factors in patients’ lives that leave them isolated, such as housing conditions or other practical problems. Her position and those of other physicians cited in this essay reflect the historical particularity of French medicine in which the context, or milieu, of patients including social, environmental, and political factors is considered essential to understand and address their problems (Gissis 2009; Henckes 2011). Dr Jacob, another general practitioner, had a more pointed criticism of the use of medications to treat what he considered social problems. He suggests that people are too willing to say, “Oh, I recognize [social phobia], and I’ll give you this drug and everything will be good,” echoing Dr Gitton’s discomfort with prescribing medicines or minerals to treat complex conditions. Cognitive and behavioural therapy and medications, he argues, are not the appropriate interventions: When you say social phobia, it’s so nice because you’ve got peace and quiet socially. I mean, there is no need to have any kind of political drive behind it. “Oh my! You’ve got social phobia? Take this drug and everything will be okay.” If instead you reject the definition, say that it’s psychological or moral pain, felt by an individual in reaction to the situation, and that a situation itself

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may be pathogenic, that it creates pathological anxiety; you are now in a completely different ball game. Dr Jacob believes that a socially-engaged explanation of social phobia symptoms will help patients more than will teaching them to adapt, either through medication or behavioural retraining, to the “pathological” conditions they may experience. Labelling patients’ anxiety as social phobia is a cop-out, he argues, that neglects their real problems. These clinicians share a concern that the medicalization of social unease allows physicians, their patients, and society at large to turn a blind eye to the moral and political conditions that produce isolation. It is not only physicians who are uncomfortable with a more purely medical approach to social phobia. The people I spoke to who were undergoing treatment for social phobia expressed both relief at having been diagnosed with a medically legitimate and treatable condition, as well as a desire not to entirely ignore the nonbiological factors they believed influenced their experiences, whether social or personal. In the case of Mr Vial, a middle-aged businessman, the diagnosis of spasmophilia helped him to understand his nervousness and his related somatic symptoms. He is now diagnosed with social phobia, a diagnosis that has been a great relief to him because of its clear explanations of his psychological symptoms. To him, the label provides assurance that he is not losing his mind. Mr Vial explains: A year ago … I started going on the Internet more often. I said that it’s time that I get rid of this fear … and, in looking for information, I found the site for Les Phobiques and another two or three sites, and I started to put a name to what it is I was feeling. Before that, all I had was my suffering … I found out that I wasn’t alone. I found the words for my suffering. Mr Vial described how he had experienced these problems since he was a child and for many years had treated them with a variety of medications including psychopharmaceuticals, psychotherapies, and somatic treatments. These interventions were often offered without accompanying labels or explanations of his problems, except spasmophilia, which did not explain the extent of his psychological anxiety.

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While he was wary of psychiatric labels, saying, “From the moment that you describe a psychosomatic or psychological problem, and from the moment that you go to see a psychologist or psychiatrist, you are already in the domain of the mad,” he was grateful for the understanding of his experiences that the label social phobia gave him. When he searches for further information on the condition, he prefers Internet sites that are the most, “clinically and medically relevant.” Despite his eagerness to embrace a highly medicalized account of his condition, he nonetheless points to personal and professional experiences that triggered his problems. During his childhood, his condition had been more or less controllable; however, his divorce, ten years ago, led to his social phobia taking on “enormous proportions.” It was this personal experience in addition to professional situations, for example having to give presentations, that led to peaks in his anxiety and which he identifies as responsible for triggering his problems. Nonetheless, some of the physicians and patients I spoke to expressed no difficulty accepting biological explanations for spasmophilia and social phobia. These individuals seemed most comfortable working within the medical sphere and distancing themselves from complex, multicausal explanatory frameworks. The ambivalence of other people I spoke to – physicians and spasmophiles turned social phobics alike – to medicalize a broad set of anxiety symptoms reflects the tension between wanting to give a name to patients’ anxiety and making it manageable on the one hand, and uneasiness with stripping the conditions of their social, personal, or political meaning on the other hand. Like the nevra-suffering women Lock describes, neither the medicalized accounts of anxiety nor the critiques of medicalization and the prevailing social order provide an antidote to their suffering (Lock 1990, 2004). Each explanation has a situational power that legitimates different aspects of suffering, leaving patients negotiating a complicated terrain.

D is c u s s io n : M e d i cali zati on a n d R e m e d ic a li zati on The diagnostic conversion experienced by spasmophiles-turnedsocial phobics draws attention to the complexity of the sociotechnical systems in which diagnoses and treatments gain coherence and knowledge about the mind and body is produced (Lock and Nguyen 2010). Over the course of the lives of the people I spoke to,

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different medical models came in and out of vogue, the power of different forms of scientific knowledge rose and fell, and different sets of anxiety symptoms became sources of shame and subject to medical intervention. While the spasmophiles who became social phobics are people whose nervousness and anxiety have consistently been out of step with social expectations, the acceptable means of addressing their condition have changed. The ways in which these individuals are normalized also reflects shifts in notions of agency in the rest of society. While treatments for spasmophilia were appropriate in a more paternalistic and authoritarian culture of mental health, the contemporary emphasis on autonomy and action encourages a prioritization of functionality (Ehrenberg 1998), which is emphasized in the treatment for social phobia. For those living with the diagnoses spasmophilia and social phobia, the conversion process, like the adoption of a diagnostic label itself, is complicated. It involves forgetting what you once knew about yourself and learning the “truth” of who you really are. It involves learning to focus on certain signs as symptoms pathology, but also as experiences to monitor the improvement, deterioration or deviation from the normal trajectory of people like them. It involves learning to feel medications working and placing hope in this intervention as the one that will alleviate their anxiety. These changes are significant, from accepting evidence of the key role of minerals in bodily overexcitability to rewriting thoughts and sentiments as epiphenomena of particular biochemical pathways. Setting aside the question of what condition these people really suffer from, it is perhaps more interesting to examine how and why particular diagnostic labels and treatments were taken up. As with the nevra-suffering women described by Lock, labels and the treatments provide spasmophiles-turned-social phobics with individual moral exculpation. At the same time, they serve to naturalize the social order (Lock 1990) by allowing nervous French citizens to endure the personal, social, and political sources of their anxiety through medication and cognitive and behavioural training. While accounts of personal stress as well as critiques of the pathological social and political status quo entered into physicians and patients’ narratives, they were unable to identify means of avoiding, changing, or challenging the social, political, and professional situations that caused them such stress. Ultimately, the diagnostic labels offered the most pragmatic means of managing culturally undesirable sentiments and behaviours.

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no t e s 1 French bottled water provides specific information on its magnesium content and magnesium is still recognized, popularly, for its calming properties. For instance, water high in magnesium is considered good to drink after dinner. 2 The diagnosis of panic disorder, which could have replaced spasmophilia, was never adopted in France as it neither fit with local understandings of anxiety at the time, nor had a strong promoter, unlike in North America. 3 Professor Klotz, an endocrinologist, was described to me as well-known for his hostility to psychological explanations of patients’ troubles and to psychiatry in general. 4 The impact of popular books such as these cannot be overestimated, as in the case of The Boy Who Couldn’t Stop Washing (Rapoport 1989), which made obsessive-compulsive disorder a household name in North America (Healy 1997, 206). 5 The symptoms he attributes to tétanie latente nonetheless remain broad (Durlach and Bara 2000). 6 Social phobia is new in France in the sense that it is only recently being diagnosed, but the diagnosis was introduced by Marks and Gelder in 1966, elaborated on by Marks in 1970, and introduced into DSM-III in 1980. 7 SmithKlineBeecham became GlaxoSmithKline. GlaxoSmithKline produces paroxetine, sold as Paxil in North America and Deroxat in France, which was the first medication licensed for the treatment of social phobia in France. 8 I have used pseudonyms for all interviewees. 9 Historically, French psychiatry has been dominated by psychoanalysis, but important seats of power, in the form of hospital-based academic positions, have been claimed by the cognitivists whose influence continues to rise. Outside of Paris and its suburbs, by contrast, eclectic psychoanalytic perspectives prevail. The Parisian battle will likely spread to these areas soon, however, as new physicians educated according to a cognitive and behavioural model enter the work force and as continuing medical education increasingly emphasizes this new model of the mind and brain. 10 Outside of Paris there are fewer cognitive and behavioural therapists, and other physicians are less likely to use the label social phobia. 11 This is no doubt an underestimation of the overlap of spasmophilia and social phobia in the support group. Spasmophilia affects far more women than men. Two thirds of my interviews, however, were with men. 12 The term he used was angoisse, which can be translated as anxiety or anguish, so has more significant connotations than the term anxiety (anxiété in French).

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R e f e r e n ce s André, C., and P. Légeron. 1995a. [Social phobia: clinical and therapeutic approach.] Encephale 21 (1):1–13. – 1995b. La Peur des autres: Trac, timidité et phobie sociale. Paris: Éditions Odile Jacob. – and F. Lelord. 1998. L’Estime de soi: S’aimer pour mieux vivre avec les autres. Paris: Éditions Odile Jacob. – and Muzo. 2002. Petites angoisses et grosses phobies. Paris: Seuil. Arney, J., and A. Rafalovich. 2007. “Incomplete Syllogisms as Techniques of Medicalization: The Case of Direct-to-Consumer Advertising in Popular Magazines, 1997 to 2003.” Qual Health Res 17 (1): 49–60. Beck, Aaron T. 1976. Cognitive Therapy and the Emotional Disorders. New York: International Universities Press. Cathébras, P. 1994. “Neurasthenia, Spasmophilia and Chronic Fatigue Syndrome in France.” Transcultural Psychiatry 31:259–70. Coffin, Jean-Christophe. 2009. “La psychiatrie par temps de crise.” Études 6 (400): 751–61. Davidson, J.R. 2003. “Pharmacotherapy of Social Phobia.” Acta Psychiatr Scand Suppl (417): 65–71. Durlach, Jean, and Michel Bara. 2000. Le magnesium en biologie et en médecine. Cachan: Éditions Médicales Internationales. Ehrenberg, A. 1998. La fatigue d’être soi : dépression et société, Bibliothèque. Paris: Éditions Odile Jacob. – 2004. “Les Guerres du Sujet.” Esprit (November): 74–85. Farmer, P. 1992. a i d s and Accusation: Haiti and the Geography of Blame, Comparative Studies of Health Systems and Medical Care. Berkeley: University of California Press. Gauthier, U. 2006. “Personne n’est parfait.” Le Nouvel Observateur, 80. Gayda, M. and G. Vacola. 1982. “Le concept de spasmophilie et ses limites.” Journal de Psychiatrie Biologique et Thérapeutique 2: 30–5. Gissis, Snait. 2009. “Interactions Between Social and Biological Thinking: The Case of Lamarck.” Perspectives on Science 17 (3): 237–306. GlaxoSmithKline. nd. “Les Phobies Sociales: Anxiété Sociale Pathologique.” (free educational CD-ROM and guide). Goffman, Erving. 1963. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs: Prentice-Hall. Healy, David. 1997. The Antidepressant Era. Cambridge: Harvard University Press. Healy, D. 2004. “Shaping the Intimate: Influences on the Experience of Everyday Nerves.” Soc Stud Sci 34 (2): 219–45.

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Henckes, N. 2011. “Reforming Psychiatric Institutions in the Midtwentieth Century: A Framework for Analysis.” History of Psychiatry 22 (2): 164–81. Horenstein, M. 1986. “Spasmophilie ou attaque de panique?” Presse Médicale 15: 1230–6. Kirmayer, L.J. 1988. “Mind and Body as Metaphors: Hidden Values in Biomedicine.” In Biomedicine Examined, edited by M. Lock and D. Gordon, 57–94. Dordrecht: Kluwer Academic. – 1992. “The Body Insistence on Meaning - Metaphor as Presentation and Representation in Illness Experience.” Medical Anthropology Quarterly 6 (4): 323–46. Kleinman, A. 1982. “Neurasthenia and Depression: A Study of Somatization and Culture in China.” Cult Med Psychiatry 6 (2): 117–90. – 1988. Rethinking Psychiatry: From Cultural Category to Personal Experience. New York: Free Press; London: Collier Macmillan. Klotz, H-P. 1983. Être Spasmophile et Bien Portant. Paris: Presse de la Renaissance. Lakoff, A. 2005. Pharmaceutical Reason: Knowledge and Value in Global Psychiatry, Cambridge Studies in Society and the Life Sciences. Cambridge: Cambridge University Press. Lépine, J.P., and A. Pélissolo. 2000. “Why Take Social Anxiety Disorder Seriously?” Depress Anxiety 11 (3): 87–92. Lloyd, S. 2006. “The Clinical Clash over Social Phobia: The Americanization of French Experiences?” BioSocieties 1 (02): 229–49. – 2008. “Morals, Medicine and Change: Morality Brokers, Social Phobias, and French Psychiatry.” Cult Med Psychiatry 32 (2): 279–97. – and Nicolas Moreau. 2011. “Becoming ‘Normal’: Normativity, Ideals and Disorders of Mood and Anxiety.” Medical Anthropology 30(6). Lock, Margaret. 1990. “On Being Ethnic: The Politics of Identity Breaking and Making in Canada, or, Nevra on Sunday.” Culture, Medicine and Psychiatry 14 (2): 237–54. – 2004. “Medicalization and the Naturalization of Social Control.” In Encyclopedia of Medical Anthropology: Health and Illness in the World’s Cultures, edited by C.R. Ember and M. Ember, 116–24. New York: Springer. – and P.A. Kaufert. 1998. Pragmatic Women and Body Politics, Cambridge Studies in Medical Anthropology. Cambridge: Cambridge University Press. – and V.-K. Nguyen. 2010. An Anthropology of Biomedicine. Oxford: Wiley-Blackwell.

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Meyer, C. 2005. Le Livre Noir de la Psychanalyse. Paris: Éditions des Arènes. Mintzes, B. 2006. “Disease Mongering in Drug Promotion: Do Governments Have a Regulatory Role?” plos med 3 (4): e198. Monnin, I. 2006. “Je me sens nul … mais je me soige. Apprendre à s’aimer.” Le Nouvel Observateur, 78–9. Numéra, Y., F.C. Hugues, J. Gillet, Ch. Ely, and J. Marche. 1979. “Symptomatologie observée chez 162 malades classés comme spasmophiles (tétanie chronique idiopathique ou constitutionnelle).” Annales de Médecine Interne 129: 9–15. Payer, Lynn. 1988. Medicine & Culture: Varieties of Treatment in the United States, England, West Germany, and France, first edition. New York: H. Holt. Pélissolo, A., C. André, F. Moutard-Martin, H.U. Wittchen, and J.P. Lépine. 2000. “Social Phobia in the Community: Relationship Between Diagnostic Threshold and Prevalence.” European Psychiatry 15 (1): 25–8. Pélissolo, A., and J.P. Lépine. 1995. [Social Phobia: Historical and Conceptual Perspectives]. Encephale 21 (1): 15–24. Prieur, C. 2006. “Devenir acteur de sa thérapie.” Le Monde, 15 March. Rapee, R.M., and S.H. Spence. 2004. “The Etiology of Social Phobia: Empirical Evidence and an Initial Model.” Clin Psychol Rev 24 (7): 737–67. Rapoport, Judith L. 1989. The Boy Who Couldn’t Stop Washing: The Experience and Treatment of Obsessive-Compulsive Disorder. Markham: Penguin. Sareen, L., and M. Stein. 2000. “A Review of The Epidemiology and Approaches to the Treatment of Social Anxiety Disorder.” Drugs 59 (3): 497–509. Saunders, J. 2000. “The Practice of Clinical Medicine as an Art and as a Science.” Med Humanit 26 (1): 18–22. Segrestaa, J.M. 1981. “Qu’est-ce que la spasmophilie?” Cahiers Médicaux 7: 9–10. Serra, E. 2003. “Le Patient.” In Aspects Psychologiques de la Douleur Chronique, edited by A.-F. Allaz, 43–64. Paris: Institute Upsa-Douleur. Sidoun, P., R. Fontaine, and G. Faludi. 1989. “Spasmophilie, attaques de panique et névrose hystérique. Premier partie: Les entités cliniques.” Concours Médical 111: 2047–159. Le Temps. 2006. “Se débarrasser de ses phobies grâce à l’hormone du stress.” 28 March.

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Van der Geest, Sjaak, Susan Reynolds Whyte, and Anita Hardon. 1996. “The Anthropology of Pharmaceuticals: A Biographical Approach.” Annual Review of Anthropology 25: 153–78. Weisz, George. 2001. “Spas, Mineral Waters, and Hydrological Science in Twentieth-Century France.” Isis 92 (3): 451–83.

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6 Unconventional Psychiatric MedicoPoliticization: The Making and Unmaking of Behavioural Disorders in Pelotas, Brazil Dominique P. Béhague In t ro du cti on Over the past two to three decades, the use of child- and adolescentspecific psychiatric diagnoses such as conduct disorder and attention deficit hyperactivity disorder (A D HD ) has grown rapidly in North American and Western (particularly Anglo) European psychiatry. The proliferation of these categories is an outgrowth of what some have described as a paradigm shift in psychiatry: from a more interpretive psychodynamic tradition to one that is embedded in the standardized classification system of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III) and that purports to be broadly and universally applicable (Mayes and Horwitz 2005). Scholars have devoted considerable attention to investigating the effects of this paradigm shift, looking specifically at pharmaceuticalization and the emergence of reductionist research practices that define child and adolescent psychopathology almost exclusively in terms of behavioural prototypes (Singh 2002). Despite growing fears that this model is being exported to countries across the globe, in Brazil the situation is markedly more multifaceted. Although there certainly are indications of the growing medicalization of psychiatry (see Pastura, Mattos, et al. 2007), debates on the perils of medicalization, which are often framed in terms of the foreign imposition of medical values, are also mainstream occurrences in  both popular and expert arenas. This scepticism originates in a

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century-long psychoanalytic tradition that has at times been infused with Marxist-inspired medicine and in the psychiatric deinstitutionalization movement, which began in the 1980s postdictatorship era. Unlike in the United States and the United Kingdom, deinstitutionalization has not meant the total marginalization of psychoanalysis. Rather, it has provided an opportunity for the production of a revisionist psychodynamics, one that has moved away from psychoanalysis as an elitist medical aesthetics and towards its use as a tool for the political emancipation of the poor (Tenorio 2002). It is perhaps in Brazil’s noncapital cities, where expert communities are smaller and more removed from the influences of global biological psychiatry, that psychodynamic orientations continue to sustain social psychiatry’s reticence to embrace medicalization. In Pelotas, a small town in southern Brazil where I have been conducting ethnographic research since 1991,1 “psi” experts2 often highlight the detrimental impact that labelling young people with behavioural diagnoses has on both their well-being and on their already marginalized status in society. Psi is a local term used to refer to the conglomerate of psychiatrists, psychologists and social workers who provide mental health services in both the public and private sectors. Many read Foucault and associated writers, or are proficient in the Foucauldian language of biopower, and they use this framework to inform their own attempts to analyze mental illness. Throughout the 1990s, interest in tackling the socioeconomic determinants of mental illness underpinned the expansion of mental health services to a wider patient population. Social psychiatry’s current success is attested to by remarkably high levels of utilization of psi services and by young patients’ professed enthusiasm for approaches that locate cause not in the body or brain, but in the complex relation of self with society (Béhague 2009)3. At the same time, DSM -derived behavioural diagnoses are increasingly apparent in the lexicon and clinical practices of psi providers4. When asked about this trend, several therapists stated that they found diagnostic tools introduced by the D S M -I I I to be a clear way of raising awareness and focusing the attention of parents and teachers towards potential “problem children.” Most were also quick to assert that a technical concern with diagnosis need not translate into reductionist therapy. Though I observed several individual cases where this was indeed true, I also began to notice a disconcerting trend: behavioural

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diagnoses were being applied to lower-class youth and to boys by many school staff members and some therapists in a highly systematic way. Psychodynamic categories, in contrast, were more frequently used to analyze the problems of upper class youth and girls – a pattern confirmed in our epidemiological analysis (Béhague 2004). Though the distribution of reductionist therapies is not as neatly distributed according to class- and gender-based lines, recent reports suggest that, in the clinic, pharmaceuticals and use of scientific knowledge that attributes cause to individual psyche are on the rise.

P o l a r iz at io n o r Entanglement? How is one to analyze these initial findings? Psi practitioners in Pelotas do not divide themselves into identifiable camps, with biomedical and psychodynamic psychiatric approaches sitting in opposition to one another, so it is not the case that the above distribution reflects stark differences in professional practices, as has been found to be the case in the United States (Luhrmann 2000). Is it, then, a question of highlighting the difference between psychiatrists’ professed ideals and the reality of their practices, insinuating perhaps that the use of behavioural diagnostic and therapeutic practices is an enduring (if latent) form of classist biologization? Elitist anxieties regarding the need to garner greater control over a perceived deviant underclass certainly prevail and are partially reminiscent of a nineteenth and early twentieth century Brazilian asylum-based psychiatry that justified the containment of undesirable kinds of people by making recourse to eugenic discourses of pathology (Costa 1976). However enticing, these Foucault-tinged interpretations fail to consider contemporary extra-clinical forces that help to account for the demise of social psychiatric intention, forces emerging, for example, from fragilities in the welfare state, from the therapist’s and patient’s experience of inequity and class conflict, and from tense and overburdened school environments. Such an interpretive framework also fails to recognize the fact that therapy does at times remain true to its current politicizing ideals. Given the powerful history of asylum psychiatry in Brazil and the newness of the psychiatric deinstitutionalization movement, these occurrences are truly exceptional. What, then, are the circumstances that support therapists in realizing their social psychiatry ideals? What can these circumstances tell us about how things change?

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T h e A n t h ro p o l o g y o f Bi omedi ci nes In the 1970s, the concept of medicalization developed primarily as a form of social critique, a warning about what authors understood to be “Foucauldian biopower” with its tendency to individualize problems and obscure the social determinants of ill health (Lock and Nguyen 2010). This critique became well publicized. Medics and those running medical institutions took heed, as did the general public. Biomedicine itself was transformed in the decades that ensued (Rose 2007). Yet, as Lock and others have highlighted, we have been hardpressed to let up on our assumption that biomedicine is a singular entity that exerts power in hegemonic ways, through social constructions that endorse biological reductionism and a tendency to blame the individual (Hacking 1998; Lock and Kaufert 1998; Young 2008). Margaret Lock’s work has been at the forefront of a broader effort in medical anthropology to focus on the varied forms of power that have proliferated with the transformation and emergence of multiple biomedicines (Gordon 1988; Lock 1995; Lock 2001; Franklin and Lock 2003). By the late 1990s, Lock and colleagues provided a plethora of examples on the ways people respond to medicalization – not with complete subservience or even resistance, but rather with a mixture of selective confrontation, partial compliance, and “ambivalence coupled with pragmatism” (Lock and Kaufert 1998, 2; Lock and Scheper-Hughes 1990). In my own research, psychiatric heterogeneity is of the essence. Being interested in the psychiatric defiance of biopower, I use a comparative framework to explore the emergence of politicizing psychiatric practices and the way they acquire meaning as they circulate though social structures and travel through time. In this regard also, Lock’s work is eminently instructive for it skilfully combines reflexivity and narrative constructions of subjectivity with a broad-based comparative approach that considers differences across as well as within cultures (Fox and Gingrich 2002). Without falling into the traps of sociological categorization or reductionism, her epistemology develops a deeper understanding of the social contexts that account for the subjective experiences of the informants she came to know and for the different forms of entanglements that her informants came to develop with biopower (Lock 1995; 1996). The ethnographic work presented in this essay is based on longterm fieldwork (1997–2007) with young people in their communities and homes and in the institutionalized settings (schools, clinics,

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local government associations, and neighbourhood groups) where they come into contact with an array of psi and pedagogic experts. My research used a combined ethnographic and anthropologicallyinformed epidemiological approach, embedded in an ongoing 1982 epidemiological birth cohort study initiated by the Department of Social Medicine at the Federal University of Pelotas (Victora, Barros et al. 2003). The incorporation of a longitudinal ethnographic component in the 1982 cohort began in 1997, when the cohort youth were 15 years of age, and continued for a period of ten years.5

U n c o n v e n t io n a l M e d ico-poli ti ci zati on Because unconventional medico-politicization emerges in contradistinction to class-based and gendered norms, I must first briefly review normative dynamics, in the experiences of both boys and girls. Exceptional Politicization through Class Struggles: Young Men As noted, boys were more likely to receive a behavioural diagnosis while girls were more likely to receive a psychodynamic diagnosis (Béhague 2004). Though low-level behavioural disruption was broadly considered to be a normal demonstration of masculinity and leadership for boys, when it came to those from lower socioeconomic echelons teachers and school staff tended to refer for psi care more readily, reflecting what several psi experts identified as “prejudicial attitudes” regarding the heightened “aggressive” nature of those living in poverty (Béhague 2009). Such boys were often identified for referral in antagonistic classroom contexts and as a result of classbased conflicts that were played out with teachers and peers. Therapeutic interactions that ensued were equally conflict-ridden, a process that further marginalized patients and exacerbated existing class conflicts. Therapists were by and large unwilling participants in this process; many felt powerless and forced by the social context itself to respond in a way that simply contained emotional outbursts, reluctantly pathologizing the social. Given my interest in understanding how exceptions to these patterns arise, I focus here on the minority of young men who underwent therapy but who were, over time, empowered and politicized as a result of their therapeutic experiences. The meaningful analysis of the social determinants of mental distress was, perhaps, the most

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central feature that these exceptional cases shared. Though most aspects of therapy were initially reductionist and individualizing, the stigma associated with behavioural diagnoses did not last long, for extroversion was readily reinterpreted from a more critical perspective. Discussions held in the psi sessions helped youth to create awareness not only of their own emotions but of how their lives were situated within larger socioeconomic contexts, which they came to believe accounted for their difficulties. This “critical consciousness,” as such awareness is often termed, helped several of these young boys temper their reactions to what they described as an emotionally volatile and conflict-ridden school-based experience. The developmental aspects of these changes cannot be underestimated. Flávio, for example, initially sought psi care for the emotional turmoil associated with the death of his brother and for what he described as adolescent-induced emotional outbursts that became the source of many problems in school. Flávio was referred to a psychiatrist, who defined therapy in broad terms to include not just verbal analysis but outreach into the very community in which Flávio lived. After a year of therapy, Flávio explained that the changes ensuing from both his psi therapy and what he came to consider a “normal” process of maturation to adulthood were central contributions to the development of a sense of “critical consciousness.” As he stated, “It’s not that you have to lose your charm (graça) when you grow up, but you must become conscious (tomar consciencia) of the fact that you have grown up, that you can’t do this or that anymore.” While therapy helped Flávio focus on calming down and outgrowing his outbursts, the critical consciousness he developed also gave him a space for reflecting on the larger societal reasons for his problems. On several occasions, Flávio readily acknowledged the importance of both his brother’s death and his family’s economic deprivation in making him feel “anxious.” So interwoven was his sense of emotional well-being with his socioeconomic situation that he often wondered if he and his family would ever achieve any degree of upward mobility. It was economic security, he explained, that would truly enable him to feel calmer and “more rested.” One suspects that Flávio’s, and other youths’, experience of therapy constitutes a conceptual reconfiguring of their behaviour that simply scratched the surface of potential politicization but was never truly transformed in a way that reduced their sense of alienation

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from society or that translated into sustained political participation. Anthropologists have shown that politicization in highly inequitable societies engenders forms of resistance that do not become revolutionary but, rather, perpetuate hierarchical institutional systems (Scott 1990; Scheper-Hughes 1992). As Flávio himself insinuated, the urgings to engage with political consciousness may ultimately end in disappointment when confronted with the limitations of an intensely classist society. However, there were clear indications of personal and structural transformation in what these young boys experienced. Over time, Flávio’s interaction with psi therapy became powerful not only because he continued to develop newfound narratives of politicization, but because he ultimately used psi therapy to address a number of practical issues relating to his social relationships in school and beyond. Together with the therapist, the more he interpreted his emotional turmoil and frustrations in a way that favoured a focus on the social determinants of illness, the more he felt empowered to engage in social life and in informal and formal political activity. Unlike many lower-class youth who feel socially awkward in school, Flávio actively pursued an informal leadership role, even though this often meant exposing himself to critique from peers, to increased probability of violence, and to living on the margins of multiple realities. “If there’s a serious issue that needs to be discussed,” he once explained, “such as when a friend of mine has a serious problem, I  can help him, and he listens to me, he does what I advise him.” Socially-induced conflicts relating to class relations came to be a salient and productive part of Flávio’s therapeutic focus. After two years of intermittent support from a psi therapist during times of increased social conflict, Flávio went so far as to become active in his school’s club for student representation, an entity considered foreign and elitist by most lower-class youth. These results suggest the evolution of a more complex, indeed cyclical, relationship between political consciousness-raising, medicalization, emotional distress, and political action. Initial debates regarding the behavioural disorder itself, whether aggression, conduct problems, or learning difficulties, became a tool through which political debates were nurtured and political activity stimulated. Political activity itself led to higher levels of mental distress, for it inevitably exposed these young men to relationships with peers from other socioeconomic strata and with whom conflicting power

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dynamics emerged. In several such cases, the relationships causing turmoil were explicitly pursued because youth actively placed themselves in a politically active role, instigating, for example, informal gatherings among acquaintances to discuss problems in school and neighbourhood life. Several found themselves actively returning to psi therapy as a way of managing the difficulties arising from such situations; a way of problem solving and assuaging the stresses of classist institutionalized alienation. With time, the cyclical relationship between therapy and politicization became a conduit for the transformation of personal politics into a more formal type of political consciousness and practice. As psi therapists helped these young men iron out social upheavals and related feelings of betrayal, criticism, and slander-micropolitics in an informal sense, they also stimulated them to feel more capable of engaging in formal political activities from which lower-class youth are generally alienated, including signing petitions, campaigning for student representation, voting in elections, participating in local youth chapters of political campaigns, and becoming active in local neighbourhood organizations that advocate for the rights of shantytown dwellers. Maurício’s experiences demonstrate the expanding and timedependent aspects of this cyclical politicization–medicalization relationship quite well. Though sent to a psychologist by his mother when he was thirteen years of age because of concerns relating to adolescent rebellion, Maurício initially rejected the intervention, which he interpreted as a form of punishment. In later years, Maurício’s reflections changed. As he described, “Yes, I saw a psychologist when I was younger. I think my parents thought I would become too rebellious because, in reality, they are not my real parents so they were worried that I would become revolted.” Although Maurício came to accept the view that part of his problem lies in an inherent and ingrained way of being (“I have it in me, I could be rebellious always,” he once exclaimed), this did not preclude him from also considering the negative emotional influence of “thinking about things too much.” When asked to expand on the nature of these things and what exactly makes him “rebellious,” he mentioned aspects such as difficulty relating to his family, fear of violence in his neighbourhood, and anxieties regarding future unemployment. In reflecting on his early experiences with therapy upon turning nineteen, Maurício did not feel his problems had dissipated; in fact,

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his personal circumstances remained much the same and had not objectively improved. However, he did feel he had learned how to control his emotional reactions to his environment (to “let them go a bit”) and explained that, with the psychologist’s help, he had stopped “reacting negatively” and in an emotionally volatile way. Despite Maurício’s focus on his individual reactions and emotions, he developed, concurrently, a heightened politicized sense of the social and economic factors underlying his concerns with violence and unemployment. His dual ability to control emotional reactions and to understand underlying social determinants was an essential stepping-stone for Maurício’s desire to find ways to avoid alienation in the school setting, and to render his experience of school and society as a whole more just. Rather than react to class tensions primarily with introversion and resentment, as many lower-class boys do, therapy enabled him to address his emotional turmoil and find ways to gain legitimacy, currency, and clout in school. Maurício also began to initiate more generic debates regarding class, class-based conflicts, and economic inequities. With time, he extended his concerns regarding the deleterious impact of societal injustice by analyzing the situation of lower-class peers, mobilizing on their behalf, and showing pride in their working-class background. While it became clear that youth like Flávio and Maurício were engaging in politicization at both the level of consciousness-raising and actual practices, there remains the important question of whether any of these interventions helped them to address the challenges that beset them. Might the final effect of such politicization simply be to leave youth content with their lower-class existence and prideful working-class identity? In these exceptional cases, therapy did indeed help youth tackle concrete problems such as scholastic achievement, both through direct applications of study skills and, more importantly, by helping them to manage feelings of alienation and anxiety. Indeed, seeking a better quality of life represented a delicate social balancing act: while these boys aimed to increase their standard of living, this was a process that required them to gain at least partial proximity to formal institutional authority and upper-class values. Yet such proximity also entailed exposure to classism and, thus, a depreciation of the masculine leadership qualities these young men had managed to develop in their (often) more socially homogeneous communities. In making sense of this challenging situation, most young men sought

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to avoid becoming upwardly mobile in such a way that would alienate them from their home communities and persuade them, as some explained, “to buy into” the values of the upper class. As a young teenager, for example, Maurício wanted to improve his quality of life, but he continually rejected the merits of schooling, claiming that it was an institution “made for the rich” where the poor were treated like second-class citizens. He disdained boys who actively sought to mingle with middle class peers and showed his commitment to preserving a working class identity by avoiding mixing with upper-class boys where possible. Maurício’s therapist found ways to respond to this dilemma with considerable sensitivity, helping him to manage the emotions that arose from undertaking this balancing act and, importantly, to maintain an inclusive social life. Once these class-based inner conflicts were resolved, Maurício immersed himself in school and his academic activities with greater enthusiasm and less apprehension, engaging with youth of various socioeconomic backgrounds without feeling that he was compromising either his core sense of identity or his masculinity. Ultimately, the ability to integrate into the school environment, to  seek upward mobility, and to temper the anxieties that often accompanied these young men’s attempts to do so were key distinguishing characteristics for young men such as Maurício and Flávio. Therapy helped them to overcome their fears and realize their leadership potential – to engage with the micropolitics of school life, with their studies, and with formal political processes in a way that upheld rather than negated their political beliefs and working-class identities. Exceptional Politicization through Gendered Class Struggles: Young Women As noted, the great majority of young women received a psychodynamic diagnosis regardless of class background. This is not necessarily curious, since most of these women expressed their emotional distress with introspection and personal reserve and thus in ways that, while technically pathologized, conform to the norms of good school behaviour. Moreover, in several cases, a psychodynamic label and therapeutic process was heavily symbolically infused with the adoption of middle-class values and an aspiration for upward mobility.

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In contrast, a small number of girls, all of them from the lower socioeconomic echelons, were atypically referred to a therapist for behavioural problems. Referrals were experienced as a logical, almost inevitable, consequence of their preexisting unconventional nature. These young women not only self-identified as “different from most girls,” particularly as it related to gender norms, but their behavioural outbursts – both before referral and once in the therapy – were explicitly motivated by a desire to contest social norms that relegate women to the private sphere of the household and restrict their entry into a form of public life generally reserved for men. Several girls, for example, highlighted their need for “freedom” from the restraining socializing practices of their parents and the inequitable way teachers allowed boys to wander the halls and playground indiscriminately, while reining girls in. Though these young women actively shaped their identity based on what could be considered a localized form of youth feminism, they also acknowledged that their choices caused them considerable emotional turmoil. Ana, for example, described herself as an “atypical girl” for a number of reasons, not least because she was constantly getting into trouble alongside her male peers. The daughter of rural migrants to the city, she explained that unlike most girls in the shanty she never shied away from new experiences, always sought to engage actively with the world outside her shantytown, and was naturally inclined to be forthright and “voice her opinions” when witnessing unjust situations. At the same time, she lamented that her “atypical nature,” while expanding her horizons, impacted negatively upon her emotional well-being. As she described, her active decision to adopt behaviours considered inappropriate for “young shantytown women” – visiting friends in other parts of the city, shopping in the city center rather than in the safe confines of her shantytown, dating many different boys, and going to dance clubs unaccompanied by a boyfriend – exposed her to social criticism, potential violence, and social conflict. “I got in a fight with a [street kid] once,” she described, “and he looked at me like, ‘I’m such a poor thing, how could you do that,’ as if I were taking advantage of a child. But they are not children. I got so upset that day, my nerves attacked me and I vomited, the whole situation makes me vomit, the politicians who [don’t do anything to help], the street kids [who attack with knives].” Ana was prone to such attacks of nerves and was sent several times to the school psychologist by her

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teachers for her “aggressive” behaviour (and, as one teacher told me, probable sexual impulsiveness), but she considered this unjust and precipitous. Why, she asked, were girls not allowed to be defiant and rowdy? Though Ana questioned the motivations behind the referrals, she was not surprised and even used the opportunity to question the therapist about such social unfairness. The conflicts young women like Ana experienced with school staff and, subsequently, with psi therapists upon being referred, were not only more intense than for young men, they were also consciously insisted upon and sustained by young women themselves. Margarete, for example, was referred for psi care because of both repeated scholastic failure and behavioural outbursts. When asked about the psi referrals she received, Margarete was quite negative. While she acknowledged her difficulties, she firmly stated that she had failed so many times in school not because she was “agitated” or naturally got “bad grades,” which in her view would have been a reflection of her emotional state and intellectual abilities. Rather, she actively chose to spend time on the streets and away from school, a male pattern of socialization, despite the fact that her neighbourhood was mired by particularly high levels of drug trafficking and violence. Highlighting the fact that the school psychologist inappropriately pointed toward Margarete’s behaviour problems as the cause of her academic failure, Margarete rejected all recommendations put forth by the school’s psychologist and prioritized “getting by in school” through cheating. It would be incorrect to state that she did not value education; rather, Margarete clearly stated she felt unjustly singled out and shunned by school staff, and this, rather than a dislike of studying, was at the core of her problems. Like other girls identified with behavioural disorders, Margarete was unique in that she was not only aware that such behaviours were typically masculine but took pride in demonstrating her defiance of school authority throughout her school life even if she admitted to feeling sad that her lack of conformity had made her social life as a young teen less predictable and jovial. Although a volatile and potentially alienating process, the interactions that Margarete and girls like her had with therapists also differed from their male counterparts in the degree to which the encounter was precipitated by and enabled explicitly political attitudes. Among young men, politicization was nurtured throughout the course of medicalization, and debates regarding the diagnostic label itself eventually paled in significance as supportive therapeutic

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process progressed. In contrast, at the core of the behavioural outbursts young women experienced was a long-standing, self-ascribed rebel identity that had begun to develop years prior to being referred to psi care. Debates relating to the veracity of diagnosis itself thus remained core to what eventually became a politicizing therapeutic process. In fact, some of these women went so far as to explicitly defy what they understood to be normative patterns. Rejecting the possibility that they might be suffering from the frail depressions that beset upper-class women, the women explained that afflictions infused with behavioural outbursts were more accurate reflections of the suffered conditions that cause distress amongst working-class women. Margarete, for example, explained that the behaviours leading to her referrals – she was continuously rowdy in class, had dozens of brief romantic encounters with boys, and did not worry about the rumours that her perceived sexual laxity was likely to instigate – were central to her unconventional approach to gender norms. Though her teachers viewed these as signs of emotional distress, she consciously persisted in implementing her choices and doing so in a public way. The very act of being identified as behaviourally disruptive served the important political function of repudiating segregationist gender-based values. Given the conflict-ridden nature of these young women’s experiences, one might expect subsequent therapeutic sessions and psiinduced transformation, when and if it did occur, to be even more punctuated and gradual than it was for young men. I found the converse to be true. Therapeutic politicization was enabled not through a subtle nurturing process, as it was for boys, but, rather, through a process of repeated contestation, often initiated by young women themselves and played out with willing therapists who understood that their role as representatives of institutional authority should be at the forefront of the therapeutic process. As for boys, politicized consciousness-raising within the clinical context often aroused not just political action but also heightened emotional anxieties relating to the politics of class relations, a process that led to the search for more psi therapy. In the case of young women, however, this cycle was considerably more intense, debate ridden, and emotionally draining. Girls explicitly stated that their problems resulted from engaging with an unfair gendered world in explicitly confrontational ways. Though the clinic provided a safer and more supportive environment than is found in society as a whole, the therapeutic experience

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reproduced these politicized struggles, thereby leading to both higher levels of mental distress and a continued desire for the therapy itself. As therapy progressed, the focus of psi discussions shifted from the transgression of gender norms to the issue of economic inequities and how class-based discrimination accounts for emotional distress. “Acting out” was reconceptualized as a calculated statement against not only the values of rigid gender demarcations but of class structures as well. By shifting from gender inequities to an analysis of class inequities, young women were effectively adopting a more socially acceptable agenda, one that gives them more legitimacy – and importantly, leadership - than arguing for gender equality, which in fact many lower-class men did not agree with. Such transformations took place slowly, over the course of a year or two in some cases. Eliane, for example, explained that she first received a psi referral for acting out because she was “different from most girls.” She had chosen an active social life on the streets, had freely dated several young boys irrespective of possible ensuing gossip and slander, and had failed two years of schooling by age fourteen. Though Eliane initially accepted the idea that she suffered from memory and attention difficulties – the explanation one of her teachers homed in on – she was eventually quite critical, stating that although there are “some nice teachers, most of them just yell at you, they don’t care at all about the actual students.” When Eliane turned eighteen she returned to therapy, this time with a new school psychologist who allowed her the space to develop more intricate etiological understandings. It was at this juncture that Eliane began to develop the idea that her learning problems related not only to memory blanks during test taking, or even to her boyish nature, but to the stress of everyday life. She spent a considerable amount of time discussing detailed aspects of finances and cost of living, stating, “you often forget everything for school because you just start thinking about the problems we [poor people] have.” By young adulthood, the etiological importance that Eliane attributed to economic inequities had broadened considerably. Growing increasingly confident in social debates, she frequently entered into spontaneous and confrontational discussions about social injustices, countering common stereotypical notions that individuals were to blame for their living conditions. “I am doing everything possible to try to get work, but it’s really hard,” she explained one day. “You know, it’s the rich people that make us people poor, no really, I mean

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it. Because if we work for a rich person, you earn a tiny amount [and] you work like crazy, you do everything. Then they tell you to do just one more little thing and then before you know it they are exploiting you. They want us poor people to be fucked, they are not interested in us.” Eliane also came to actively reject common theories of the role of parenting in shaping youth criminal pathology and stated, instead, that young people steal because of bad government policy, because “the government does nothing to help people young people get jobs.” Quite radically, she also explained that young people actively chose life in prison because it provided a better quality of life than in the shantytown, and people who are always begging should not be considered criminals: “They have a right to ask, they are right, because they don’t have food.” An important consequence of contentious discussions such as these was an increased acceptance of psi therapy itself. Eliane’s criticisms of the upper classes had initially been directed at any adult officially linked to authoritative institutions, and she had been quick to dismiss school therapists as part and parcel of the indifferent elite. With time, her opposition was targeted less at the psi therapists themselves and more at the school, which she critiqued for being an inauspicious environment that unfairly requires careful manoeuvring on the part of the lower class. As she proceeded to discuss her experiences with the therapist, she developed a clear distinction between the stigmatizing practices of teachers and the more nuanced supportive practices of the psi therapists she came to know. Ana similarly contested the school structure and gender norms while distinguishing this from the way therapists can help students understand the challenges of the school environment: “The [school] director isn’t worth anything,” she explained one day. “She just stays in her office and doesn’t do anything, but the psychologist explained things about why things go wrong. Schools need psychologists because everything is chaos in schools now … [and] so the young person becomes agitated, very aggressive.” Using therapeutic interactions to directly confront class conflicts also meant that women felt empowered to become political advocates of sorts, focusing not just on their own well-being, but on that of their communities and peers as well. Margarete, initially quite vocal in her dislike of the therapist she was referred to, was visiting the school psychologist of her own accord by the time we saw her at age eighteen. With the psychologist’s help, Margarete had found

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ways to retain her unconventional choices and behaviours while working through their social and emotional consequences. In subsequent years, she developed a detailed sense of the importance of improving the community in which she lived. By the age of twentytwo, she had even begun to consider studying psychology as a professional option that would help her help others. Eliane’s attitude was similarly entrenched not in a straightforward alienating lowerclass position, like many of her peers, but rather in a keen desire to engage with her community and school. In her early twenties, Eliane became quite interested in local politics and the coming elections. She demonstrated deep scepticism of the mayor’s promises to provide more jobs and argued that employment and health should be high on politicians’ list of priorities. And although she had initially stated that she did not believe in the political process enough to register to vote – stating, for example, “The problem is no one thinks like the povo [the people, the populace], they all [politicians, upper class] think differently than we do” – she did eventually choose to take part in the elections. For these unique and unconventional young women, socially sensitive psi therapy was both the product of and a nurturing force for the development of informal micropolitics and for the formal politicization of gender and class inequity. The mere medicalizing process – the referrals, therapy, and diagnosis – was politicizing in that it rendered conflicting interactions and viewpoints poignantly visible. Therapists’ ability to provide youth with a supportive space within which to legitimately explore their frustrations with social life was also no doubt key. As therapists confronted entrenched inequities and difficult clinical situations, they maintained an adaptive rather than prescriptive approach, allowing for both an individualized problem-solving focus and social mobilization. Indeterminacy amongst therapists was well tolerated; indeed, it was encouraged. Alongside this, several young women came to show increasing trust and interest in formal political processes. The effects of this medical process on both political consciousness and practices can only partially be attributed to the qualities of the psi therapist or exchange itself. That is, the politicization that young women developed throughout their psi experiences emerged out of the way that psi knowledge and practices derive social meaning in the specific context of the school and within the highly politicized life course of young women themselves.

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D is c u s si on The developments in the world of psi practice described in this essay are clearly cultivating a diffuse, permeable, and malleable medicalization process (Ehrenberg 1998). The making and unmaking of behavioural disorders is a fluid if also socially patterned, and contingent, phenomenon. While behaviour-based diagnostic categories are being used in a way that generates unease among young people, it is precisely their contested nature that provides an anchor for addressing wider social issues. Such malleability is allowing psi knowledge to gain greater social prominence at the same time that it forces therapists to relinquish a certain amount of diagnostic and therapeutic control. By institutionally and ideologically broadening the scope of psi interventions in order to achieve social psychiatry’s aims, therapists are simultaneously entrusting teachers, school staff, parents, and young people to use, develop, and modify psi therapy in a relatively organic if at times conflict-ridden way. That the conflicts that do arise are not consistently dampened by therapy but addressed, and in some cases sustained, signals a potentially important quality of what for some youth eventually became a positive, and even transformational, therapeutic experience. In giving more attention to the question of how differential forms of medicalization unfold and interact with politicization, this essay also highlights the erosion of the distinction between psychiatry, science, and society, and the increasingly heterogeneous and deprofessionalized ways that society influences the production and circulation of authoritative knowledge and practices (Latour 1993; Callon 1999). To be sure, for young women identified with behavioural disorders, pathways toward medicalization originate and are solidified well before youth come into any meaningful contact with psi professionals themselves. Reductionist and alienating forces do not emanate primarily from forms of medicalization created by psi practitioners but, rather, from the alienating interactions young people have in the school setting and in society as a whole. The specific role that teachers and school staff play in instigating and sustaining medicalization processes is of critical importance in shaping the extent to which psi therapists are able to implement a form of therapy that touches upon social as well as individual elements. In this way, the successes and failures of the politicizing aspects of therapy can be

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attributed not to the therapists per se (although they were critical, for they could have insisted on individualizing treatment and reductionist interpretations, and yet some did not) but rather to the young people themselves and the way they have incorporated the values of what is in effect both a highly medicalized and politicized Brazilian society. As Lock and Kaufert once noted, “biomedical technologies are not autonomous, but are themselves the products of the same historical, cultural and political contexts to which [people] are responding” (Lock and Kaufert 1998:2). These findings beg the question of which new and unexpected transformations psi professionals may witness in the coming years. For some youth, the very therapeutic process, being a product of modern urban life, was actively sought as a way of learning about modernity, of discussing and debating its effects. One could even argue that they were searching for ways to enhance their access to formal citizenship and to make political claims without simply reproducing existing power-structures (Nguyen 2005; Biehl 2007; Rose 2007). The explicit contestation of class- and gender-based norms that psi therapy appears to be enabling has the potential to challenge wider assumptions in the production of scientific knowledge about the determinants of pathology. Youth are rejecting psiimbued stereotypes about the nature of their behavioural problems, while at the same time using therapy as a supportive base from which to further what they identify as more acceptable socially embedded causal explanations for their difficulties. If such developments gain greater ground, they hold the potential to “trouble natural categories” (Lock 2001), unsettling not just individualistic biomedical practices in the clinic but also some current epidemiological trends that posit the biological, prenatal, and genetic determinants of behavioural disorders as exclusive or dominant causes. By troubling naturalization, these young people are engaging with what Fassin (in contrast to current scholarship on the life sciences and state-of-the-art biomedical intervention) has identified as another politics of life, that is, the politics of bioinequalities, where biopower should be understood not only in terms of normalization and governmentality but in relation to a politics of legitimacy and value (Fassin 2009). The significance of these exceptional forms of medico-politicization is further underscored by considering the life course trajectories of  those young women who were identified by teachers as being

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aggressive but who, unlike the women described above, were never able to develop a meaningful relationship with a therapist. As I have shown elsewhere, the routines of pathologization that these women experienced in schools often became so inflammatory and so intensely focused on recasting behavioural problems as critical risk factors for unwanted teen pregnancy that these women’s preexisting marginalized status became deeply entrenched (Béhague 2012). Identified as being immature, virtually destined to become teen mothers and thus also culpable for the perpetuation of poverty, women’s reactions to such pathologization led to increased emotional distress and, ironically, to the implicit search for young parenthood as an act of defiance. Such developments are exemplary of what Lock has described as the production of a local biology (Lock and Nguyen 2010): in the absence of social psychiatry’s positive if exceptional therapeutic effects, a new kind of emotionally turbulent teen pregnancy is being produced, one that is inextricably bound with social stigma and Brazil’s highly inequitable citizenship projects (Holston 2008). These developments are instructive for anthropologists of biomedicines more generally. Exceptions that deviate from social patterns should not always be understood as acts of resistance arising from an explicit and discernible reactionary process. Rather, they arise from ruptures within social structures and, thus, hold the potential to become enduring aspects of social life (Martin 1987; Boddy 1989; Lock 1989; Escobar 1992). For a minority of youth in Brazil, socially sensitive therapy may be leading to more than just increased political consciousness and activity. Psi-oriented developments may be contributing to the cultivation of a unique group of young communitybased leaders committed not simply to the contestation of injustice, but to a form of negotiation based on considerable social dexterity and personal insight. What remains to be seen is whether groups of youth such as these will be able to sustain their positive social roles and, together with therapists, contribute to lasting transformations in their own life course, in psychiatry, and in society as a whole.

no t e s

1 A portion of the case-study materials presented here first appeared in an article published in Medical Anthropology Quarterly in 2009 (Béhague 2009).

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2 Though there are significant differences between these cadres of professionals, in Pelotas, psychodynamic psychiatrists take a leading role in the training of mental health providers, such that one can safely assume a high degree of professional homogeneity in this community. 3 In our 2001 survey, conducted when the youth were nineteen years of age, almost 30 per cent had seen a psychiatrist or psychologist at some point in their lifetime, a level of utilization that is similar to that found in the United States. Although youth from the upper socioeconomic classes tended to use psi therapists in greater proportions than those from the lower socioeconomic class, use is still high among the lower class, with about one quarter of lower-class youth having had some therapeutic contact with a psi professional at some point in their lifetime. 4 Among youth who had reported having seen a therapist in our 2001 survey, just over half used terms to describe their problems that were more psychodynamic in orientation, which are comprised of traumatic life events (24 per cent) and nerves, stress and anxiety, and, more recently, depression (31 per cent). A not so insignificant proportion – about one third in total – described their afflictions in relation to behavioural disorders, which include aggression, conduct problems, externalizing behaviours, and learning difficulties. 5 In 1997, a randomly selected subsample of ninety-six mother-child pairs was taken from the birth cohort and visited over several years by myself, an anthropological colleague based in Brazil (H. Goncalves), and a team of four research assistants. This sample was chosen at random not with the aim of testing probabilistic hypotheses, but as a way of ensuring the inclusion of difficult-to-reach informants. Intensive periods of ethnographic fieldwork were conducted in 1997, 1999, 2000–01, and again in 2004–07.

R e f e r e nce s Béhague, D. 2004. The Shaping of Adolescent Pathology in the Wake of Brazil’s New Democracy. Department of Anthropology. Montreal, McGill University, Doctoral Thesis: 451. – 2009. “Psychiatry and the Politicization of Youth in Pelotas, Brazil: The Equivocal Uses of ‘Conduct Disorder’ and Related Diagnoses.” Medical Anthropology Quarterly 23(4): 455–82. – 2012. “Taming Troubled Teens: The Social Production of Mental Morbidity Amongst Young Mothers in Pelotas, Brazil.” Social Science & Medicine 74(3): 434–43.

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Biehl, J. 2007. Will to Live: a i d s Therapies and the Politics of Survival. Princeton: Princeton University Press. Boddy, J. 1989. Wombs and Alien Spirits. Madison: University of Wisconsin Press. Callon, M. 1999. “The Role of Lay People in the Production and Dissemination of Scientific Knowledge.” Science, Technology and Society 4(1): 81–94 Costa, J. 1976. Historia da Psiquiatria no Brasil. Rio de Janeiro: Editora Documentario. Ehrenberg, A. 1998. La Fatigue d’être Soi: Dépression et Société. Paris: Éditions Odile Jacob. Escobar, A. 1992. “Culture, Practice and Politics: Anthropology and the Study of Social Movements.” Critique of Anthropology 12(4): 395–432. Fassin, D. 2009. “Another Politics of Life is Possible.” Theory, Culture & Society 26(5): 44–60. Fox, R. and A. Gingrich (2002). “Introduction.” In Anthropology, by Comparison, edited by A. Gingrich and R. Fox, 1–24. New York: Routledge. Franklin, S. and M. Lock. 2003. Remaking Life and Death: Toward an Anthropology of the Biosciences. Santa Fe: School of American Research Press. Gordon, D. 1988. “Tenacious Assumptions in Western Medicine Examined.” In Biomedicine Examined, edited by M. Lock and D. Gordon, 19–56. Dordrecht: Kluwer Academic Publishers. Hacking, I. 1998. Mad Travelers: Reflections on the Reality of Transient Mental Illness. Charlottesville: University Press of Virgina. Holston, J. 2008. Insurgent Citizenship: Disjunctions of Democracy and Modernity in Brazil. Princeton: Princeton University Press. Latour, B. 1993. We Have Never Been Modern. Cambridge, MA : Harvard University Press. Lock, M. 1989. “Words of Fear, Words of Power: Nerves and the Awakening of Political Consciousness.” Medical Anthropology 11(1): 79–90. – 1995. Encounters with Aging: Mythologies of Menopause in Japan and North America. Berkeley: University of California Press. – 1996. “Ideology and Subjectivity: Midlife and Menopause in Japan and North America.” In Ethnography and Human Development, edited by R. Jessop, A. Colby, and R.A. Schweder, 339–70. Chicago: The University of Chicago Press. – 2001. “The Tempering of Medical Anthropology: Troubling Natural Categories.” Medical Anthropology Quarterly 15(4): 478–92.

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– and P. Kaufert. 1998. “Introduction.” In Pragmatic Women and Body Politics, edited by M. Lock and P. Kaufert, 1–27. Cambridge: Cambridge University Press. – and N. Scheper-Hughes. 1990. “A Critical-Interpretive Approach in Medical Anthropology: Rituals and Routines of Discipline and Dissent.” In Medical Anthropology: A Handbook of Theory and Method, edited by Thomas Johnson and Carolyn Sargent, 47–72. Westport, cn: Greenwood Press. – and V.-K. Nguyen 2010. An Anthropology of Biomedicine. Oxford: Blackwell Publishing. Luhrmann, T. 2000. Of Two Minds: The Growing Disorder in American Psychiatry. New York: Picador. Martin, E. 1987. The Woman in the Body: A Cultural Analysis of Reproduction. Boston: Beacon Press. Mayes, R. and A.V. Horwitz. 2005. “DS M-III and the Revolution in the Classification of Mental Illness.” Journal of the History of the Behavioral Sciences 41(3): 249–67. Nguyen, V.-K. 2005. “Antiretroviral Globalism, Biopolitics and Therapeutic Citizenship.” In Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems, edited by A. Ong and S. Collier, 124–44. Oxford: Blackwell Publishing. Pastura, G., P. Mattos, et al. 2007. “Prevalence of Attention Deficit Hyperactivity Disorder and its Comorbidities in a Sample of SchoolAged Children.” Arquivos de Neuro-Psiquiatria 65(4a): 1078–83. Rose, N. 2007. The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton: Princeton University Press. Scheper-Hughes, N. 1992. Death Without Weeping: The Violence of Everyday Life in Brazil. Berkeley: University of California Press. Scott, J.C. 1990. Domination and the Arts of Resistance: Hidden Transcripts. New Haven: Yale University Press. Singh, I. 2002. “Bad Boys, Good Mother and the ‘Miracle’ of Ritalin.” Science in Context 15(4): 577–603. Tenorio, F. 2002. “A reforma psiquiátrica brasileira, da década de 1980 aos dias atuais: história e conceito.” História, Ciências, Saúde – Manguinhos 9 Jan-April(1): 25–59. Victora, C.G., F.C. Barros, et al. 2003. “The Pelotas (Brazil) Birth Cohort Study, 1982–2001.” Cadernos de Saúde Pública 18(5): 1241–56. Young, A. 2008. “A Time to Change Our Minds: Anthropology and Psychiatry in the 21st Century.” Culture, Medicine and Psychiatry 32(2): 298–300.

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7 Cases and Narratives in Private Medical Providers’ Accounts of Managing HIV in Urban India Karina Kielmann Dr PA : How long can you talk to a patient? When you suspect HIV … you are interested in knowing whether your diagnosis is right or wrong. When you have seen an open book case … you know you have to get those investigations [done] as fast as you can (pa, allopathic doctor, sixteen years of practice, italicized words spoken in English).1 Dr C S: There are restraints and difficulties in narrating diseases. The homeopath is not in a hurry to give a snapshot prescription … He has to take whatever time is necessary for collecting the information and then prescribe. That is the only way … I wouldn’t call it counselling but it’s a kind of rapport [that] a patient and physician develop over time … and that helps in managing the patient (C S, homeopathic doctor, eleven years of practice, interview conducted in English).

In t ro du cti on While medical pluralism in India has been of longstanding interest to medical anthropologists (see Leslie, 1976; Leslie and Young, 1992), it is only more recently that pluralism, under the guise of privatization in Indian health care, has attracted comparable interest among public health specialists. Accompanying nationwide economic reforms toward a market-based economy (Purohit 2001; Sen 2003),

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India’s private medical sector rapidly expanded throughout the 1990s, encompassing a wide range of formal and informal medical providers with varying degrees of institutional legitimacy. Operating alongside the government health services, private medical practitioners represent the first pattern of resort for a majority of the Indian population, regardless of income (Sengupta and Nundy 2005). These practitioners, many of whom are trained in Indian systems of medicine and homeopathy (ISM&H),2 frequently combine both allopathic and nonallopathic prescriptions and treatment regimens. Largely unregulated by government policies (Bhat, 1999), this mixed practice has raised concerns about equity, efficacy, and quality of care (Phadke 1995; Uplekar et al.1997; Kamat 2001). Legal battles over the risks (harmful practice) versus the benefits (greater access to care) of mixed practice are occurring at the same time as renewed national promotion of ISM&H through, for example, upgrading of educational standards, and quality control and standardization of medicines through drug safety and efficacy trials. Between 2001 and 2005, alongside colleagues in Pune, India,3 I examined, among other things, the translation of global policies around infectious disease control within the context of pluralistic practice – the promotion of a national curriculum for medical pluralism on the one hand (Khan, 2006) – and regulation of the private medical sector, on the other hand. As suggested by Lock and Nichter (2002), an inquiry into pluralism is never just about documenting local patterns of resort for different medical traditions but, rather, an inquiry that must adopt the vantage point of local and global relationships. In this sense, we aimed to understand how practitioners were responding to changing patterns of health seeking and marketplace competition, as well as to globally-driven government initiatives to partner with them on public sector disease control programs. While public-private partnerships had already been initiated in the area of tuberculosis control in the 1990s, the role of private doctors in responding to the H I V epidemic in India was relatively new but gaining in importance, as antiretroviral therapy (ART ) was not widely available through the public sector (Sheikh et al. 2005). Private doctors had easy access to a range of rapid testing technologies for many conditions including H I V and consequently tested for HIV indiscriminately, with limited consideration of international guidelines around H I V testing and counselling (Joseph et al. 2010). By 2005, fourteen generic antiretroviral drugs were available on the

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Indian market although their pricing was beyond the reach of most HIV /A ID S patients (Kumarasamy et al. 2005). From January 2002 to August 2003, we conducted a series of studies investigating private sector delivery of care for H I V patients in Pune. A quantitative survey provided descriptive information on reported practices,4 however the findings raised questions about the social and economic considerations that shaped providers’ therapeutic actions, as well as their positioning vis-à-vis biomedical best practice in the management of HI V patients. As a follow-up, we conducted in-depth interviews with twenty-seven of the providers who had originally participated in the survey.5 In examining how private medical providers in this setting talked about H I V cases and their management, I found Margaret Lock’s “troubling” of “natural categories” provocative and useful in a number of ways. Lock has argued that “the complexity of responses to medical technologies and medicalization cannot be teased out without an approach that is sensitive to the situated exigencies of the everyday world of informants and their relationships within families, communities and local political groupings” (Lock 2001a, 482). Lock’s emphasis on pragmatism, commonly applied to individuals’ responses to the medicalization of bodily experiences (Lock and Kaufert 1998), is equally relevant to a study of practitioners who operate in a highly competitive, pluralistic marketplace of therapeutic options including tremendous variation in biomedical practice. At the time, biomedical knowledge about H I V and AI D S in India was in no way standardized but open to contestation through multiple avenues, both professional and public. Anxiety about the visibly growing number of patients with H I V , poor understanding of the workings of diagnostic tests and ART , and ambivalence about international regulations of HI V testing and care were evident in the interviews we conducted with private doctors in Pune. Facing considerable uncertainties around adherence, side effects and drug interactions of antiretroviral therapies in transition phase (Kielmann et al. 2005), many doctors either referred their patients to an emergent category of private HI V specialists for ART , or managed their patients through a mix of supportive and complementary treatments from nonallopathic traditions (Mignone et al. 2007). For the most part, doctors’ responses to questions around how they managed H I V patients were pragmatic, ranging from “selective resistance to selective compliance” (Lock and Kaufert 1998, 18)

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towards so-called gold standards in the testing and treatment of individuals with H I V. As they strove to maintain professional authority in the face of clinical uncertainty around H I V , the doctors moved, at times uneasily, between standardized case descriptions of disease management and more subjective narrative accounts of patient management. This pragmatic interplay between case and narrative elements, which is the focus of this essay, allows me to explore the ways in which, as Lock has argued (2001a; 2001b), medical practitioners’ objectivity and style of reasoning rests on an inherently fluid moral economy6 of knowledge; in other words, the perceived value of scientific argument only takes shape within a framing of the social relationships and processes that enable everyday clinical practice in this setting.

P r ivat e M e d ic a l P r acti ti oners a n d H IV in I ndi a Studies of HIV management in the Indian private medical sector report prolific levels of routine testing and poor adherence to recommended testing procedures (Sheikh et al. 2005; Sheikh and Porter 2010). Answers to questions of how to uphold ethical guidelines in HIV testing and how to prevent irrational use of antiretroviral drugs in the private sector (Chinai 2003; Brugha 2003) are generally prescriptive, involving the enforcement of regulatory controls and adherence to testing and treatment protocols (Bhat 1996; Brugha and Zwi 1998). However, the deliberations around what constitutes ethical and rational practice rarely consider the complexity and contradictions of local social and systems responses to HIV/AIDS in India. While guidelines on HI V testing, counselling, and treatment based on the World Health Organization (W H O ) were put in place by the National A I D S Control Organization (N ACO ) in 2002, they were not tailored for use in the private sector and were, accordingly, interpreted and implemented differently across states. Attempts to introduce national-level legislation ensuring informed consent before HIV testing were met with enormous resistance by medical practitioners. They argued on grounds of protecting their own safety but also against the importation of medico-legal concepts that have little meaning in India (Sheikh and Porter 2010; 2011). The high-profile promotion and promise of homegrown ART was offset by the enormous logistic challenge of comprehensively

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managing vast numbers of individuals living with AI D S in the public sector (Kudale et al. 2010). Expansion of the government free ART program launched in 2005 fell short of national targets (U N AI D S 2006), complicated through inadequate supplies of drugs, poorly understood toxicity, and the drug resistance to first-line regimens. At the same time, international projections of the “looming AI D S disaster” initially met with strong resistance on the part of the Indian Ministry of Health and the head of the Indian Council of Medical Research (I C MR ) who contested the selectivity of evidence used for the predictions (Sharma 2000; Sharma 2002; Cohen 2004). Ambiguity in the official response to the H I V epidemic in India, the public sector’s struggle to meet targets for access to ART , and a blind eye to the role of private practitioners in H I V /AI D S control contributed to a climate of considerable uncertainty for providers dealing with HI V patients. With a majority of the patient population unaware of testing and treatment protocols and unable to afford A R T (Ramchandani et al. 2007), the management of H I V patients in the early years of expanding the A RT program in India was highly contingent on individual practitioners’ knowledge, skills, awareness of patient circumstances, and their situation within a larger network of service providers (Kielmann et al. 2005; Mignone et al. 2007). This was especially the case for densely populated metropoles like Mumbai and Pune, which by the late 90s had become hubs of HIVrelated activity, both in terms of being identified as high prevalence areas but also because of the concentration of HIV-related nongovernmental organizations (NGOs), research institutes, and HIV specialists who were acquiring a reputation of technological expertise in diagnosing and advising treatment to high numbers of HIV patients. Our fieldwork was conducted in Jaynagar,7 a densely populated and busy area covering about twenty-five square kilometres in the historical heart of old Pune. In addition to two charitable hospitals, two public hospitals, a public AIDS clinic with voluntary counselling and testing facilities, and numerous municipal dispensaries, the private medical market in this area is extensive. At the time of the study, there were close to fifty private diagnostic labs and nearly one hundred private pharmacies, and approximately 300 private medical providers practicing regularly in the area. These included practitioners trained in allopathy and the other four systems officially contributing to the health system (Ayurveda, homeopathy, Unani, and Siddha) as well as many informal providers. Most nonallopaths conceded to

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mixed practice, while trained allopaths often explained that they borrowed styles of diagnostic reasoning and therapeutic proscriptions from nonallopathic systems (see also Khare 1996). In what follows, I describe how the practitioners we interviewed alternated between case and narrative dimensions in their accounts of patients with HIV, a pragmatic strategy that attempted to resolve the medical and moral uncertainties inherent to treating HIV at this point in time.

C as e E l e m ents The “case” occupies central importance in epidemiological and clinical practice. It invokes notions of statistical representation, rational knowledge, a series of bureaucratic procedures around definition and surveillance (case management), but also a certain fatalistic logic, as recounted in case histories. When we asked providers to tell us about a recent case of an H I V patient that they had managed in their clinics, they summarized cases in a straightforward manner, as in the following extracts from interviews with Dr S M and Dr D N: There was one patient suffering from fever for one month … he had done so many tests like X-ray, blood reports. A pneumonic patch was seen in his X-ray. The pneumonic patch was of t b [tuberculosis] and we started him on a k t [anti-Koch’s treatment], plus we did this test for H I V also. And when the H I V test becomes positive, there is not much change in the treatment. The reason for this is that the main treatment for H I V is antiviral drug … A patient from this area cannot afford [ART ]. What we do is we just give them antituberculin drugs and supportive treatment … We tell the patient to take precautions. That patient took antitubercular treatment for one year, and he was fine. Then all these things [symptoms] started up again. But this will happen because it is the nature of the disease … a different type of disease … (SM, Bachelor in Unani Medicine and Surgery [BU M S ], four years of practice, italicized words spoken in English). One [patient] I recently investigated … He came for weight loss, fever, and loose motions [diarrhea]. After giving him routine treatment we did not find any change. He continued to have fever so I told him, “Your fever is not going down. Let us do all the investigations.” He was positive. e l i s a -positive. Once it

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becomes positive I usually do not give further treatment. I usually refer because in our time limit it is not possible for us to tell everything to the patient in detail and answer all their questions. (DN, Bachelor in Medicine, Bachelor of Surgery [M BBS , equivalent to MD], seventeen years of practice, italicized words spoken in English). As presented in these accounts, case histories were characterized by a fairly clear sequence of events: First, a case was revealed through a description of signs that were translated into symptoms. Second, cases were verified through a series of standardized procedures. Third, cases were submitted to therapeutic prescription and subsequent monitoring. Revelation of the Case Patients with HI V were often introduced as a bundle of symptoms that persisted and defied routine treatment. In most cases, references were made to commonly accepted knowledge on the appearance and chronology of signs. Dr K A reminded us of the World Health Organization’s criteria for suspecting H I V . He began to suspect H I V when there was an “abnormal presentation of disease” sometimes underlined by patients’ own observations that they could not do what they normally did. Symptoms subsided only to reappear within weeks or months. Dr SP intervened when alerted by a patient’s drastic weight loss. He emphasized his duty as the man’s family physician and sent his patient, unknowingly, to test for H I V : For the last twenty years he had been coming to me so I told him, “Get yourself checked.” Because I was the family physician, I asked him to go immediately … I said, “Let us do two–three tests.” In that I wrote h i v and hb [haemoglobin] and other general … routine lab checkup examinations. He turned out to be positive. At that time I did not say anything and sent him to Dr p [a renowned H I V specialist in the city]. His treatment continued for almost six months; he became okay; his health improved; afterwards he also gained weight. But he came back again two months ago. His health had declined (S P , Bachelor in Ayurvedic Medicine and Surgery [B A MS ], nineteen years of practice, italicized words spoken in English).

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While cases were introduced as individuals who underwent physical transformations as they became sick, doctors often switched to a more generic, staged presentation of symptoms that fit the emerging case description. Following this introduction, doctors described their first active intervention, namely to verify suspicion of HIV infection. Verification of the Case Providers emphasized the importance of ruling out uncertainty through exhaustive procedures: “We collect the totality of information to confirm the diagnosis; we take the chief complaints … associated complaints, take the history right from childhood to date, not only the history of illness but as to how the person has adapted to particular or given circumstances” (C S , Bachelor in Homeopathic Medicine and Surgery [B H MS], eleven years of practice). Tests were named, ranked, and sequenced, often with dates, and validated through reference to certified institutions, for example, a well-known hospital or the official public testing and counselling centre. Referring to one of his family patients, Dr G R described his step-by-step method: “We will go on [with testing] until the final test is done … let’s see how far this disease has developed.” He seemed surprised when we asked him about information given to the patient before and after the tests and answered the question in a generalized manner: “Once the patient comes to know, what can one explain? [We say] ‘Now that you have it, you have to take treatment. Get the further tests done.’ If we do further tests, we will get to know how the disease is progressing. What is the use of sitting and watching?” (gr, B A MS, twenty years of practice). For many providers, HI V testing had become a routine investigation (Joseph et al. 2010). “Routine,” explained Dr S M , “means that when a patient comes, we don’t tell him in the first visit to do all these investigations. We give them some medicines … see how effective they are. If after giving him medicines for ten to fifteen days there is no change, then we come to the conclusion.” He continued, “Ideally, we should test every patient [for H I V ], but it is not possible practically.” Routinization was enabled through easy access to diagnostic technology in private labs. Most patients did not know that they were being tested, as HI V figured along a checklist of other items. Testing was frequently passive and disclosure of the test result was indirect, especially in the case of women and patients deemed

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less educated or less able to comprehend a positive test result (Datye et al. 2006; Joseph et al. 2010). Evidence was often established not only through routine testing but also through references to a network of expertise. Referrals, consultations, and feedback with MDs, pathologists, recognized specialists, and reputable institutions were secured through ties of professional complicity and patronage (“we have an arrangement;” “he was my classmate;” “he’s a good friend and colleague”), while the crucial moment when test results were disclosed was at times underplayed in the case presentations. Once suspicion of a case was established, the provider’s account switched to a prescriptive mode, suggesting that management involved minimal negotiation: “I explained only this much to him in a clear-cut manner [saying], ‘We did all the tests and this test is positive … you have this disease … but if you take proper treatment then complete it … meaning [if] you were given TB treatment or if the secondary infection is cured then you can live a normal life for a few years’”(SM, BUMS, four years of practice). Prescription and Monitoring Case-based reasoning was reinforced in prescriptive rules and routines regarding postdiagnosis lifestyle and treatment, as well as an emphasis on regular follow-up. Progress of the patient over time was divided into phases and monitored through reference to objectified measurements. The sense of surveillance was underlined through reference to written documentation: case papers, histories and reports. Dr PG mentions, “Separate files … in that everything is [written] because they [HIV patients] need to be given the maximum attention.” Case presentation in providers’ accounts of their H I V patients served to establish professional identity and affiliation, both individually as well as in a broader system of providers. Deference to specialist colleagues did not diminish their authority in the case presented but secured their position within a professional network. Despite diverse qualifications and variable training in biomedicine, the language used to describe cases and their management is predominantly biomedical and frequently English. Cases were circumscribed through definitional criteria, testing procedures, prescriptive rules, routines, and regular monitoring that established the weight and value of both experience and evidence. Through a variety of rhetorical means – moving from individual to generalized cases,

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from third person to first person, and through direct citation of the provider-patient dialogue – providers assumed clinical authority and competence in the case descriptions. However, as we encouraged them to elaborate particular steps along the trajectory of cases presented, a more complex and rather less authoritative picture of biomedical case management emerged. Further reading of the accounts revealed a number of points of rupture and discontinuity.

H IV D iag n o s is a n d D i sconti nui ti es Dilemmas began for the provider shortly after suspecting that a patient might be HIV positive. Ambiguity around suspicion was rife as providers claimed they could not elicit case histories, in particular around sexual behaviour (“It’s their private life. We can’t ask about that. We take it for granted”), because of the social disruption it would cause and, consequently, their patients’ loss of face. Dr G P , for example, talks about his reluctance to take the history of an older man: The worst thing is that he is a married man. He is the head of the family. I did not probe too much into the history. Otherwise the home will break down. Who will live with such a man? … Most of the time you don’t get the history as such (G P , BH M S , twelve years of practice). The silence around potentially disruptive questions and the fear of losing patients led providers to test without the patient’s consent. Consent before medical procedures, in particular H I V testing, was seen as something of a foreign concept and was resisted despite its inclusion in the guidelines put out by the National AI D S Control Organization (NA C O ) (Sheikh and Porter 2010). Many providers rather uneasily told us that they were aware that it was mandatory abroad but that Indian patients were likely to say no if one asked them and that, in any case, testing was foremost a matter of staff safety. Dr J S, a homeopathic doctor with fifteen years of mixed practice, justified testing without consent with the argument that providers need to “rule out the doubt from our minds. If we use such a big word, it can break the patient. The aim is to find out what the reality is. To put it mildly, you have to convince the patient that since you are doing the other investigations, why not do this one also? What is the harm?”

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In the case of a positive test result, often made on the basis of inadequate testing procedures,8 providers faced the dilemma of how to disclose the result to patients given their own limited understanding and possibilities for treatment. Many providers were reluctant to deal directly with the patient, explaining this reaction with reference to their close relationship to patients and their perceptions of how the patient would respond to diagnosis. Issues of confidentiality, counselling, and partner notification are tenuous at best in a setting where family doctors cater to the interests of family integrity and patronage rather than individual patient rights. In the following account, Dr GP refers to a fifty-year-old tuberculosis patient who was sent to a public sector clinic for an H I V test. The report was given to the son of the patient who then asked the doctor not to disclose the test results to his father nor to the patient’s wife. They [the family] came back … but I couldn’t disclose to [the wife] that he has H I V. His visits have become more scarce and rare. [Interviewer: So the patient does not know that he is positive?] That is very risky. I have checked his wife for H I V … but she is negative. His son said that we should not tell her. I was in a dilemma whether to tell her or not. If I tell then his family will be in discomfort (GP, B HMS , twelve years of practice). Ill at ease with this situation, Dr GP tells us that the patient should have known that he was H I V positive (“These people should have been counselled properly”) but that it was not possible for him to do so. For providers at the time of the study, counselling was still considered a relatively foreign concept, a potentially risky area engendering liabilities and requiring specific skills. As one doctor put it, “because we are from the medical field, we find it awkward to talk to them.” Therapy management was another contentious area of knowledge. Dr P G lamented his lack of experience, his inability to, “cope with this new line of treatment that is coming up. I am not used to it. I have not studied it. I am not trained in it” and said that he preferred to leave the care of H I V patients to people who know the field. Even doctors who had knowledge of ART had mixed feelings about initiating treatment, arguing that the costs for treatment and for monitoring tests were prohibitively high and that not enough was known about its acceptability, particularly in Indian patients.

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Dr A S, an experienced allopath, expressed the pressures and the dilemma of dealing with patients desperate to initiate treatment but unlikely to be able to continue lifelong treatment. He described his reluctance to give in to patient demands for treatment on the grounds of the risk that he, as a practitioner, was taking. Doctors, he argued, had “restrictions,” they could not give “complete assurance” when patients had to spend 5,000 rupees9 a month. It became “dangerous” to initiate a patient on to A R T if it was likely they would be unable to manage the costs after a few months of treatment. Finally fear, but also what providers saw as false hope in the potential of alternative treatments,10 resulted in patients’ frequent changing of providers. The dominant conception of HIV as a sexually transmitted disease contributed to a climate of secrecy. Dr MA spoke of “floating patients” who avoided going to family doctors because “they want to be discreet, they don’t want to talk much. You give them treatment and they go off.” Providers expressed frustration at not being able to hold their cases: patients get “diluted … lost in this vast society”; they keep “jumping from one laboratory to another hoping that their sample [test result] will turn negative.” Numerous points of uncertainty and resulting clinical and moral dilemmas emerge. How did providers resolve these discontinuities in practice and maintain professional identity in the face of the interviewer? I suggest here that when the clinical case dissolved and evidence-based reasoning was not feasible or convincing to the practitioner, the narrative took over and providers reasoned through stories that gave weight to the characters, relationships, and dynamics of social rather than clinical lives.

N a r r at iv e E l ements The condensed case histories presented above begin to allude to the ways in which a tacit moral economy of knowledge is embedded in scientific styles of reasoning (Lock 2001b, 36). While medical science may draw on a globalized moral economy, allowing a globalized language of case histories (Donnelly 1997), “ethnography makes it possible to examine the way in which scientific knowledge is selectively deployed in different global contexts by drawing on moral and value systems that are historically, politically and culturally informed” (Lock 2001a, 488). This was vividly illustrated as medical providers make pragmatic shifts from presenting cases or “narrating diseases”

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(Dr CS) and telling stories about patients. A somewhat arbitrary decision on my part, I decided that stories began when patients entered the account, not as clusters of symptoms but as agentive characters. This shift occurred spontaneously in many accounts, like the following: I will tell you about this one case. When she came, there was a rash all over her body. There was a lot of itching also. Secondly she had fever for two months … it was going up and down. There was a burning sensation all over the body and she had a tremendous amount of weakness. There was pain in all the joints … The symptoms would subside and flare up again. And there was a lot of weight loss within a period of two to four months. Basically, she was from Gujarat. Her husband used to work in a mill in Gujarat and her parent’s house was in Pune. So for some days after her delivery her husband was alone there while she was here. Now that child is about two to three years old. She must have gone back after the child was a little older. But soon afterwards, all these symptoms developed and because of that she came to her parents’ place. Then they told us, “These are the problems … what should we do?” (S V, BAM S , four years of practice, italicized words spoken in English). Flashbacks like the one above consist of stories with intent and as such have a number of features that allow us to examine their narrative emplotment (Mattingly 1998) within cultural scripts. In examining the narrative elements that provide weight to the doctors’ style of reasoning, I was particularly struck by the ways in which the development of specific types of H I V patients resonated with wider cultural formulations of identity and moral agency. When providers told the stories of their patients, expectations and duties of individuals were grounded in gender, age, and class-based ideals that were in turn closely linked to familial roles as sons and daughters, husbands, wives, and parents. Biographical Scene-Setting Most of the patients described were men and tended to fall into two types. The first was the “knowing” promiscuous male, who was literally as well as metaphorically associated with (sexual) mobility.

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He was embodied, for example, in the rickshaw driver with a particular “lifestyle, the way he speaks, he considers himself an expert when it comes to the opposite sex,” the truck driver, the mechanic, but also the man with “two to three businesses … his work was such that he was just moving around here and there, most of his work was outstation [out of town].” Dr CA provided us with what he described as a, “rather discouraging story” of a male patient who asked to be tested for H I V: He had a shop in this area … an artificial jewellery shop … These middle-class women used to come to his shop and they used to pay him because he was a male prostitute, and he had [sexual] exposure to forty to fifty ladies … [in the last] twelve to thirteen years … somebody had to be positive! This was a sad story for him. I tried to convince him to take treatment. He was unmarried at that time, and I told him not to marry … not to marry since [his] child might acquire this disease also. This we explained to him. Then about four to five months after he came to us for the test, he came back to us and said “Doctor, my H I V is cured” [pause] so then I said, “How?” Some quack in the village had told him to rape a girl … a virgin girl … so that his H I V would be transmitted to that lady and he gets cured, and he did it so I told him, “If you don’t leave immediately, I have to hand you over to the police!” (C A , MB B S, seventeen years of practice). The counterpart of the promiscuous male was the innocent male who is waylaid by disreputable friends, sex workers, and jealous rivals. He was often portrayed as young, none-too-bright and gullible, featured in the story of a “happy-go-lucky guy from a reasonably respected family” but with “questionable” friends, the hapless “fool” who was “tricked” into visiting a commercial sex worker, and the boy who wants to “gain sexual experience before marriage.” Women were largely absent as agentive health-seeking individuals in these stories. Rather, their status as H I V patients was discovered most frequently through affiliation to an infected husband. While portrayed with sympathy, women appeared naïve and submissive in providers’ accounts. Dr L S describes a shy young woman who cannot explain her “weakness.” She comes in one day with her motherin-law who reveals to him that she has “this problem:”

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She was infected by her husband. He drinks, beats her up, is promiscuous and hence she has got it. The husband was a little eccentric and an alcoholic. He did not do any work and he used to beat her up. He used to do everything to extract money from her (L S, MB B S, seventeen years of practice, italicized words spoken in English). Families, almost always present in the story, featured as playing a crucial role in negotiating doctors’ dilemmas and patients’ acceptance of their “fate.” Good families (described as intact, joint, closeknit, supportive) were seen to have responsible members who were closely involved with the case from the outset; the patient, deemed too young, fragile, or ignorant to confront hard facts, was sidestepped in favour of an elder, “comparatively more intelligent” brother, anxious parents, or an understanding mother-in-law. The moral duty and virtue of the immediate (joint) family was occasionally offset by the wrongdoings of more untrustworthy distant relatives, as in the story related by Dr B S : “He had his own land, up to nearly 200 acres of land and his parents died suddenly. He was about twenty-six or twenty-seven years old. There were some people from his own family who had bad intentions and had misled him” (bs, B HMS, twenty-three years of practice). Notions of class were ubiquitous in provider accounts and played a central role in characterizing individual patients, but also collective behaviour. While the area that providers work in was described as a “mixed population” commercial settlement, there were frequent references to the “lower class,” “uneducated masses” with “poor hygiene,” “addictions,” and low levels of “awareness,” crowded populations where there was “no privacy,” and where “misconceptions” and infections “spread fast.” Plots and Morality Tales Plots developed naturally from this biographical scene setting, usually starting at the point of disclosure and ensuing dramas concerning who to tell or not to tell in the context of life stories: impending marriages, conjugal relations, the desire to have children, young lives with bright futures, and old lives with shady pasts. The stories were told in the present tense and first person, with the doctor shifting

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between his own role and that of the patient and others involved. Plots within the providers’ accounts of HIV patients tended to follow a limited number of scripts that encompassed crucial turning points. The first of these dramatic elements lay in the anticipation and inevitability of the positive test result; for example, the unwitting acceptance of the patient who is told that “there is a fault in your blood” after being tested, the truth behind the woman who can’t “reveal” why she is so weak, and the imminent fall of the “happy-go-lucky guy” with “questionable friends.” Often through the mediation of significant individuals – the elder brother, the “understanding” mother-in-law, the “cooperative” father, or the specialist – the doctor then established authority in the narrative by telling the patient “what must be now done” through recourse to a “clear cut explanation” and proscriptions or through appeals to the patient’s moral obligation to protect his wife and children. A second dramatic moment was introduced when the provider was drawn into an unexpected scenario beyond the clinic as a result of the diagnosis: the wife who refuses to take treatment if her husband does not, the boy whose marriage is pending, and the patient who continues to have outside sexual relations despite the doctor’s admonition. In these scenarios, which call for stronger positioning, doctors inserted themselves as moral agents. Dr B S, for example, intoned that, “at such times, I have to play the role of the parent as well as the doctor.” Dr MA described his crucial arbitration in the case of an HIV-positive patient who was to have an arranged marriage at the same time as his younger brother. On confirming the test result, he talked to the young man’s parents – who he felt were favourably inclined toward his advice – and they decided to cancel the marriage. He elaborated: “For the mother, there was a big commotion especially [after] what happened … the engagement was over … how to break the engagement, what to tell the girl’s side, what will they think because this is a very delicate matter” (MA, MBBS, twenty-six years of practice). In the stories they narrated, doctors attributed varying degrees of moral authority to themselves, in some cases justifying drastic interventions that went beyond clinical spaces: an “offending” patient was thrown out of the clinic, a marriage was “cancelled,” and a “risky” pregnancy was aborted on the advice of the doctor. In the absence of clinical certitude, the weight of moral judgment underpinned the narration of patient trajectories more generally. While themes of fatalism (“a sad story,” “an ill fate,” “a ruined” life”) and

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hope (“buying hope, buying comfort,” “illness … has to be faced squarely,” “willpower to face the facts”) appeared to provide foregone conclusions, stories were seldom final as patient pathways of care were frequently fragmented, discontinued, or ongoing.

D is c u s si on Urban medical providers in Pune provide a rich example of pluralism in transition in relation to both privatization of the health sector and medicalization of particular diseases. In the course of the last five years, public discourse on HIV in India has undergone a major shift from the moralistic family values rhetoric of the national AIDS control program to the promise of access to rapid diagnostic and treatment technologies for HIV. As Lock suggests in her comments on globalizing (and simultaneously medicalizing) processes, this means that individuals, including providers, are, “increasingly able to reflect critically on their own situation and that of those around them … older hegemonies have crumbled, only to give way to new ones, most often in the form of knowledge that comes under the rubric of science” (2001a, 483). This phase of transition has resulted in uncertainty around both old and new moral economies of knowledge around HIV and AIDS, as practitioners struggle to make pragmatic choices in their interest and safeguard professional authority between global directives and local duties of caring. Others have similarly described Indian doctors as facing “conflicting accountabilities” (Fochsen et al. 2009) as they negotiate between the demands of standardized treatment protocols and the preferences of families. Sheikh and Porter (2011) go so far as to suggest a situation of “doctors’ disempowerment” (Sheikh and Porter 2011) in the face of topdown health policies around HIV in India. Examining general practitioners’ case narratives around another contested diagnostic category,11 Horton-Salway points out that there are, “clearly issues at stake for these doctors; they are accountable to justify their diagnoses in a context where medical uncertainty, lack of personal experience and expertise might threaten to undermine their accounts” (2002, 416). Narratives are constructed, she argues, to reduce accountability for doctors and to shift blame for clinical uncertainty on to patients. At the time of our research, HIV/A ID S similarly put professional identities of the providers interviewed in Pune at stake. Initial case presentations of H I V patients

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serve to establish that cases were meaningful entities and that management of the patient was a nonnegotiable set of authoritative and routine procedures. However, the urgency around responding to “open-book cases” with further confirmatory investigations, systematic management, and monitoring was offset by a reality in which uncertainty abounds. HI V /A I DS itself is seen as a “new” and “different sort of disease” requiring particular skills which many providers admitted to not having. At the time of the study, considerable ambiguity reigned in providers’ minds around symptomatic presentation, the testing protocol, the window period of testing, and the reliability of testing kits. Notions of consent, confidentiality, and counselling have gained unprecedented attention since the emergence of H I V , yet their applicability within Indian clinical settings remains contested and diluted (Sheikh and Porter 2011). Antiretroviral drugs came to represent an important political statement about local (Indian) resistance to international pharmaceutical patent laws in the early 2000s; however, they took a very long time to reach the public imagination and the clinic next door (Kudale et al. 2010). Against this continued backdrop of uncertainties around managing HIV patients (Sheikh and Porter 2011), narrative elements are likely to have a continued role in reestablishing professional authority in accounts of the clinical encounter. First, they construct locally meaningful and relevant patient and illness profiles and in doing so add value to the clinical case profile. Second, they authorize particular decisions and actions or the absence of them. Third, they equip these decisions with moral agency and underline the doctor’s social duties and obligations rather than his / her clinical limitations. Fourth, they can shift responsibility for the clinical plot to other agents: specialists, “quacks,” as well as the patient him or herself. The juxtaposition of case and narrative elements might be read as saying something about evidence-based versus narrative reasoning (see Mattingly 1998). This, however, seems to set up a false dichotomy. The presentation of cases in the interviews we examined is clearly narrative in structure: the drama of symptoms that don’t disappear, the sequential positioning of events, and the ritualization of procedures. In turn, stories which providers tell have formulaic elements that serve as circumstantial evidence (Good and Good 2000). There is a wider risk, I think, in locating the presentation of evidence and narrative in medical case histories too firmly in the clinic. What

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the interviews with Pune’s providers perhaps illustrate best is that styles of reasoning – whether regulatory or narrative – do not exist independently of the world outside the clinic. Indeed, reason must be relocated, suggest Cambrosio, Young, and Lock (2000, 5), by “moving it out of the minds and brains of individuals and into the social institutions, technologies and practices, through which individuals interact with one other and with other elements of the material world.” Kaufman, in her examination of physicians’ reconstructed ethical dilemmas in geriatric care, captures this point precisely when she tells us that narratives of dilemma, “reconstruct, deliberate, and explain, they also are creating medical responsibility as a lived practice” (1997, 21, italics in original). What constitutes evidence, as well as what makes a plausible story for providers in this context, is likely to change as social, legal, and political responses to H I V /AI D S in India evolve and global discussions around patient rights and physicians’ responsibilities are localized.

no t e s 1

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References to interviews with private practitioners are made anonymous through an abbreviated pseudonym. All interviews were conducted in Marathi unless specified otherwise. Many practitioners, however, use a mixture of both Marathi and English. As the use of English in a Marathispeaker often carried purposive significance, we have italicized words and phrases uttered originally in English. The Department of Indian Systems of Medicine and Homoeopathy (I S M& H), part of the Ministry of Health and Family Welfare, was created in 1995 and was recently renamed as the Department of Ayurveda, Yoga & Naturopathy, Unani, Siddha, and Homoeopathy (A Y USH). At the time of the study, I was based at the London School of Hygiene and Tropical Medicine, and working (through the UK Department for International Development funded Tuberculosis Knowledge Program) with the Centre for Health Research and Development, in Pune, Maharashtra. I gratefully acknowledge the critical inputs and support of Deepali Deshmukh, Vinita Datye, and Sucheta Deshpande who were lead researchers in the series of studies we conducted on HIV care in Pune’s private medical sector. Deepali Deshmukh was particularly helpful in thinking through the analysis of the interviews conducted with practitioners.

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Kabir Sheikh, Sheela Rangan, and John Porter provided strong guidance throughout the research process. Helen Lambert, Dominique Béhague, Naomi Adelson, Pam Wakewich, and Leslie Butt gave me valuable critical feedback on earlier versions of the paper. All private practitioners within a 5 km radius of a major public health clinic in the centre of Pune city were mapped and listed (n=479). Of these, 215 met the operational definition of a private medical practitioner and were available and willing to be interviewed in the survey on their clinical management of HIV/AIDS patients (reported in Sheikh et al. 2005). These interviews were tape-recorded with the consent of the interviewees, transcribed, and translated from Marathi to vernacular English. In this essay, I focus on a section of the interview in which providers were asked to present cases of HI V patients they had recently seen and managed in their clinic. They were specifically requested not to disclose the identity of the patient. Lorraine Daston describes a moral economy as the, “web of affectsaturated values that stand and function in well-defined relationship to one another” (1995, as cited in Lock 2001b, 34). Jaynagar is a pseudonym used to protect the confidentiality of the informants. In the quantitative survey of management practices, only 45 per cent of the providers interviewed (n=215) mentioned advising a confirmatory test after obtaining the result of the first test. Approximately US $106 at the time. Media and popular interest in reported claims of effective “A IDS drugs” from Kerala (reputed as a centre for Ayurvedic medicine and healing) were widespread in the years leading up to India’s launch of the A R T program in 2005. Myalgic encephalomyelitis (M E).

R e f e r e nce s Bhat, R. 1999. “Characteristics of Private Medical Practice in India: A Provider Perspective.” Health Policy and Planning 14(1): 26–37. – 1996. “Regulation of the Private Health Sector in India.” International Journal of Health Planning and Management 11: 253–74. Brugha, R. 2003. “Antiretroviral Treatment in Developing Countries: The Peril of Neglecting Private Providers.” British Medical Journal 326: 1382–4.

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Brugha, R. and A. Zwi. 1998. “Improving the Quality of Private Sector Delivery of Public Health Services: Challenges and Strategies.” Health Policy & Planning 13(7): 107–20. Cambrosio, A., A. Young, and M. Lock. 2000. “Introduction.” In Living and Working with the New Medical Technologies: Intersections of Inquiry, edited by Lock, M., A. Young, and A. Cambrosio, 1–16. Cambridge: Cambridge University Press. Chinai, R. 2003. “Anti-retroviral Misuse in Mumbai, India.” Bulletin of the World Health Organization 81(2): 153. Cohen, J. 2004. “HI V/AI DS: India’s Many Epidemics.” Science 304 (5670): 504–9 Datye, V., K. Kielmann, K. Sheikh, D. Deshmukh, et al. 2006. “Private Practitioners’ Communications with their Patients around HIV-Testing in Pune, India.” Health Policy and Planning 21(5): 343–52. Donnelly, W.J. 1997. “The Language of Medical Case Histories.” Annals of Internal Medicine 127(11): 1045–8. Fochsen, G., K. Deshpande, K.C. Ringsberg, and A. Thorson. 2009. “Conflicting Accountabilities: Doctor’s Dilemma in TB Control in Rural India.” Health Policy 89(2): 160–7. Good, B.J. and M. Delvecchio-Good. 2000. “‘Fiction’ and ‘Historicity’ in Doctors’ Stories: Social and Narrative Dimensions of Learning Medicine.” In Narrative and the Cultural Construction of Illness and Healing, edited by Cheryl Mattingly and Linda Garro, 50–69. Berkeley: University of California Press. Government of India (Planning Commission). 2007. Maharashtra Development Report. New Delhi: Academic Foundation. Horton-Salway, M. 2002. “Bio-psycho-social Reasoning in GPs’ Case Narratives: The Discursive Construction of ME Patients’ Identities.” Health 6(4): 401–21. Joseph, S., K. Kielmann, K. Sheikh, S. Shinde, J. Porter, and S. Rangan. 2010. “Examining Sex Differentials in the Uptake and Process of HIV Testing in Three High Prevalence Districts of India.” a i d s Care 22(3): 286–95. Kamat, V.R. 2001. “Private Practitioners and Their Role in the Resurgence of Malaria in Mumbai and Navi Mumbai, India: Serving the Affected or Aiding an Epidemic?” Social Science and Medicine 52: 882–909. Kamat, V.R. and M. Nichter. 1998. “Pharmacies, Self-medication and Pharmaceutical Marketing in Bombay, India.” Social Science & Medicine 47(6): 779–94.

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Kaufman, S.R. 1997. “Construction and Practice of Medical Responsibility: Dilemmas and Narratives from Geriatrics.” Culture, Medicine and Psychiatry 21: 1–26. Khan, S. 2006. “Systems of Medicine and Nationalist Discourse in India: Towards ‘New Horizons’ in Medical Anthropology and History.” Social Science and Medicine 62(11): 2786–97. Khare, R.S. 1996. “Dava, Daktar and Dua: Anthropology of Practiced Medicine in India.” Social Science and Medicine 43(5): 837–48. Kielmann, K., D. Deshmukh, S. Deshpande, V. Datye, J.D. Porter, and S. Rangan. 2005. “Managing Uncertainty around HIV /A IDS in an Urban Setting: Private Medical Practitioners and their Patients in Pune, India.” Social Science and Medicine 61: 1540–50. Kudale, A., K. Kielmann, S. Salve, and S. Rangan. 2010. “Health Systems’ Responses to the Roll-out of Antiretroviral Therapy (A R T) in India: A Comparison of Two HI V High-Prevalence Settings.” a i d s Care 22(Supp. 1): 85–92. Kumarasamy N., S. Safren, S.R. Raminani, R. Pickard, R. James, A.K.S. Krishnan, S. Solomon, K.H. Mayer. 2005. “Barriers and Facilitators to Antiretroviral Medication Adherence among Patients with HIV in Chennai, India: A Qualitative Study.” a i d s Patient Care s t d s 19(8): 526–37. Leslie, C. 1976. Asian Medical Systems. Berkeley and Los Angeles: University of California Press. Leslie, C. and A. Young. 1992. Paths to Asian Medical Knowledge. Berkeley and Los Angeles: University of California Press. Lock, M. 2001a. “The Tempering of Medical Anthropology: Troubling Natural Categories.” Medical Anthropology Quarterly 15(4): 478–92. – 2001b. Twice Dead: Organ Transplants and the Reinvention of Death. Berkeley: University of California Press. – and M. Nichter. 2002. “Introduction: From Documenting Medical Pluralism to Critical Interpretations of Globalized Health Knowledge, Policies, and Practices.” In New Horizons in Medical Anthropology: Essays in Honour of Charles Leslie, edited by Mark Nichter and Margaret Lock, 1–34. New York: Routledge. – and P. Kaufert. 1998. “Introduction.” In Pragmatic Women and Body Politics, edited by Margaret Lock and Patricia Kaufert, 1–27. Cambridge: Cambridge University Press. Mattingly, C. 1998. “In Search of the Good: Narrative Reasoning in Clinical Practice.” Medical Anthropology Quarterly 12(3): 273–97.

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Mignone, J., R.G. Washington, B.M. Ramesh, J.F. Blanchard, and S. Moses. 2007. “Formal and Informal Sector Health Providers in Southern India: Role in the Prevention and Care of Sexually Transmitted Infections, including HI V /AI DS.” a i d s Care 19(2): 152–8. Phadke, A. 1995. A Study of Supply Analysis of Pharmaceuticals in Satara District, Maharashtra. Pune: The Foundation for Research in Community Health. Unpublished report. Purohit, B.C. 2001. “Private Initiatives and Policy Options: Recent Health System Experience in India.” Health Policy and Planning 16(1): 87–97. Ramchandani, S., S. Mehta, D. Saple, S. Vaidya, V. Pandey, R. Vadrevy, S. Rajasekaran, V. Bhatia, A. Chowdary, R. Bollinger, and A. Gupta. 2007. “Knowledge, Attitudes, and Practices of Antiretroviral Therapy Among H I V-Infected Adults Attending Private and Public Clinics in India.” a i d s Patient Care and s t d s 21(2): 129–42. Sen, K., ed. 2003. Restructuring Health Services: Changing Contexts and Comparative Perspectives. London: Zed Books. Sengupta, A. and S. Nundy. 2005. “The private health sector in India.” British Medical Journal 331: 1157–8. Sharma, D. 2000. “India Challenges U N Agencies Estimates of HIV Prevalence.” The Lancet 356: 662. – 2002. “US charity Donation for HI V/AIDS in India Sparks Government Row.” The Lancet 360: 1576. Sheikh, K. and J. Porter. 2010. “Discursive Gaps in the Implementation of Public Health Policy Guidelines in India: The Case of hiv Testing.” Social Science and Medicine 71: 2005–13. – 2011. “Disempowered Doctors? A Relational View of Public Health Policy Implementation in Urban India.” Health Policy and Planning 26:83–92. Sheikh, K., S. Rangan, K. Kielmann, S. Deshpande, V. Datye, and J.D. Porter. 2005. “Private Providers and HIV Testing in Pune, India: Challenges and Opportunities.” a i d s Care 17(6): 757–66. UNA I D S . 2006. “U N G AS S India Report. Progress Report on the Declaration of Commitment on HI V /AI DS .” United Nations General Assembly Special Session on HI V/AI DS . New Delhi, India. http://data.unaids.org/ pub/Report/2006/2006_country_progress_report_india_en.pdf. (Accessed 12 December 2009). Uplekar, M., S. Juvekar, S. Morankar, S. Rangan, and P. Nunn. 1997. “Tuberculosis Patients and Practitioners in Private Clinics in India.” International Journal of Tuberculosis and Lung Disease 2(4): 324–9.

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8 Embodied Molecules: Negotiating Medications in Troubled Times Annette Leibing

As a member of the research group MéOS1 – studying medications as social objects – I am interested in the question of what medications do to people.2 The simplest way to discuss this is to speak of effect: medications are used to enhance, cure, pleasure, and stabilize bodies in need of change. As I will argue, however, effect is highly context-dependent and goes beyond the purely molecular level of the individual body. The relevance of this realm of beyond is the central point of this essay and is something I call embodied molecules. The idea of exploring effect more carefully was triggered by my research on the contradictions found in scholarly articles about Alzheimer medications (cf. Leibing 2009a,c), but most notably by another project focusing on subscribers to a North American Internet mailing list (referred to as the List) over a specific period in 2005–06. The subjects of this study were all people suffering from Parkinson’s disease (PD), although some caregivers and, more rarely, some health professionals were also involved. The aim of this article is not to provide new insights on virtual communities or online information gathering per se – there are excellent studies that do so (e.g., Akrich and Méadel 2002, Ziebland 2004) – but to offer, instead, a reflection on effect as a sociobiological phenomenon, triggered by some of the discussions found on the List. Because my analysis is based on the written word – written for a selected public – it is not an ethnography in the classic sense. All the in-between, the nonsaid, and shadowy issues (see McLean and Leibing 2007) can hardly be accessed, and truth claims are fragile. Nevertheless, I believe that there are enough signs

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and issues within the List to sustain my arguments regarding embodied molecules as an analytical tool for conceiving effect. Parkinson’s disease is a progressive neurodegenerative disease. It mostly affects people over sixty years old, although there is also a young onset group.3 The standard treatment consists of dopamine in combination with a number of other drugs. This kind of treatment generally continues for up to ten years. At the end of this period, side effects such as involuntary movements and painful muscle contractions become so disabling that the drug has to be withdrawn. In addition to drug therapy, there are three possible surgical interventions: ablative surgery (the destruction of a selected region of the brain), deep-brain stimulation (the most common intervention, involving the implantation of a brain pacemaker), and – only in clinical assays – stem cell treatments (Kontakos and Stokes 2000; Freed and Levay 2002; Mendez et al. 2008). Health-related Internet lists provide information and emotional support, and facilitate disease-related mobilization (Leibing 2009b). Internet mailing lists, such as the Parkinson list studied here, construct communities based on pragmatic discussions of living with a certain disease. Such “biosocialities” (Rabinow 1996) also provide identities that are inseparable from the living and reacting biological body. As Paul Rabinow (1996, 102) writes, groups formed around specific diagnostics or biological markers, “have medical specialists, laboratories, narratives, traditions, and a heavy panoply of pastoral keepers to help them experience, share, intervene, and ‘understand’ their fate.” This essay focuses on the people directly affected by the disease: the patients (and to a certain degree their caregivers), who, by virtue of being part of such a group, develop a bioidentity4 (such as “we Parkies”). Actor Michael J. Fox’s incredulous reaction to his diagnosis of Parkinson’s disease is an example of this (nonoptional) bioidentity: “If I had this disease, then I would forever be locked into a prognosis, and with that, an identity I’d had no part in creating. I’d be tracked and studied, compared against others just like me … to see how I varied from the norm” (2002, 146; emphasis in original). In a similar vein, a female member of the List wrote, “P D affects every part of my life; therefore I vote for calling it a ‘life disorder.’ (I would call it several other things but that type of language would not be tolerated on a public listserv!).” Medications play a major role in the maintenance of bioidentities: “I could walk in the street again with pride,” said a woman cited in a

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German women’s magazine (Dinklage, 2002) after one week of taking her Parkinson medications for the first time. As I will argue, the sociality manifest in the List also shapes – through a process of learning – how medications affect the bodies of the List members. It has become increasingly clear over the last few years that a concrete effect on an individual’s biology can be observed when apparently inactive medications are taken. The notion of a placebo, however, when intended as an imagined effect, is too restricted for describing this kind of bodily reaction. As Meissner, Kohls and Colloca (2011) write, part of this effect, what they call the “endogenous pharmacy,” stems from social learning, a mechanism that will be further explored in this essay.5 This situated interplay of biology and culture evokes Margaret Lock’s concept of “local biologies,” a point that will be developed below.

S t u dy D e s i gn The List is an unmoderated e-mail list service, designed to provide a forum for knowledge exchange and mutual support for personal difficulties arising from living with and treating Parkinson’s disease. The List members and the administrators of the List were notified of my intention to write an academic essay on the List. Except for three members who did not wish to be quoted, no one was opposed to my study; some of the members even encouraged me to write about their struggles and sent me their personal websites and comments. Nonetheless, to maintain anonymity, no names or geographical locations are reported here, nor any intimate details revealed. List members post approximately ten messages per day. I started to compile postings from 2005 onwards and, using some principles of content analysis, listed the main themes, issues, and information emerging in the messages. Almost all of the material used in this essay stems from the time period 2005–06. Thematic analysis showed that treatment was by far the most important issue on the list, so all postings related to treatment were then collated and analyzed by indexing them into subcategories reflecting the importance ascribed to them by the list members: types of treatment (e.g., exercise, drugs), dosage, effects on the body (including side effects), and hopeful (future-oriented) practices.6 Data were put into context, as much as this is possible online (cf. Pearce 2008), by following discussion threads and by identifying core voices, that is, members who seemed to express their opinions with more authority than others.

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C h o o s in g t h e R ig ht Medi cati on In many diseases with a heterogeneous pathway like P D , finding the right combination of medications is an onerous but important activity. A great part of the communications I reviewed concerned the optimization of dopamine treatment. Another important thread addressed the much-feared deep brain stimulation (D BS ). Integrated in both of these discussion threads was a third topic, alternative and complementary medicine, which was largely figured as a way of postponing (or extending the effect of) the first two conventional options. Finally, a fourth discussion centered on the promises of stem cell research as the biggest carrier of hope for the List members’ cure (see Leibing and Tournay 2010). List members used many strategies in their search for medications, including posting exact descriptions of dosages and effects, which could then be compared with the experiences of others. A male P D patient wrote: After the addition of Amanadine and Trihexphenidy (generic) twice a day, I have cut back on the Sinemet from 4 doses of 50/200 C R to ½ of that. I take a quick release 25/100 and one ½ a dose of the C R to start the day. Then space out the other ½ doses of C R to fit my schedule … As I work with my neurologist I get both of us smarter about my form of this disease. This kind of exchange among List members provides a wealth of information to support the recommendations of the treating neurologist. In fact, many of the postings question medical authorities and can be perceived as part of what Manuel Castells (2004) has called a “community of resistance,” a concept similar to Rabinow’s biosocialities. Both concepts index the transformative potential stemming from interest groups; although, Castells’ community of resistance does not focus on commonalities in biology. Such communities can challenge and critique orthodox views, especially with the help of new communication technologies. In this sense, many postings contain an implicit or explicit critique of parts of the health system and some of its health professionals. For example, one man with PD described weighing the information he received from his neurologist against what he received from the List:

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My neurologist prescribed Neurontin to help with the nerve / muscle pain. I took it for a while but eventually decided to quit taking it. I was hearing too many negative reports about it here on the web. I now take Naproxen for the pain and I think it helps. The expertise that patients gain through online exchange is also illustrated in the words of another man with P D : I visited my neuro last week. The intern who saw me for almost 40 minutes was trying to push Sinemet [the most common Parkinson medication] on me very hard. He sounded worse than the medical sales reps. He insisted that Sinemet does not cause dyskinesia! When I told him that Cox-2 inhibitor is important for slowing the progression of P D, he didn’t even know about it. That is the kind of younger generation of doctors we are training! … To cut a long story short, I still was not convinced enough to take Sinemet. I am determined to stay out of it as long as I can manage. Rather than fighting one enemy (such as “big Pharma”), this group, or community of resistance, pragmatically weighs different kinds of alliances that are deemed helpful. The example of voting for the Democrats in the United States – who are in favour of the legalization of stem cell research – by patients who are otherwise Republicans, shows the pragmatics of choice. As one female caregiver said, “I certainly hope Bush’s program (as much as I like him, I would have to disagree with him on this), doesn’t affect that [stem cell research] because many lives would be lost. I wish he had a neurologist on his staff.” The question of authority is important for influencing how healthrelated knowledge becomes bioscientific truth, as well as how knowledge is eventually incorporated into everyday health practices and sensations. In many cases, List members’ direct experience of what drugs do to them privileges their voices over those of other websites or of the treating neurologist. Patient testimonials provide direct evidence of efficacy to the List members, which can be conceived of as a newer way of transmitting trust and truth. This trend – toward including patients’ voices into research and regulatory practices – has been also used by pharmaceutical companies in order to counterbalance

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the growing distrust of the commercial production of information (Wahlberg and Streitfellner, 2010; Oudshoorn and Somers 2007; Lanzelius 2006). How to theorize this Internet-based negotiation of bodily experience of medication? I begin by explaining how the notion of embodied molecules derives from some theoretical debates around Margaret Lock’s concept of local biologies. I then propose a rethinking of the cyberbody through learning, which, in the way it is defined in this paper, addresses the embodiment of information as well as the biology of effect.

E mb o d ie d M o l e c u l e s a nd Local Bi ologi es Margaret Lock’s concept of “local biologies” is defined as “the way in which the embodied experience of physical sensations, including those of well-being, health, illness, and so on, is in part informed by the material body” (2001, 483; Lock 1993).7 While “embodied molecules” refers specifically to substances taken into the body, local biologies refers to the body on a broader level. Both concepts share the same preoccupation with the materiality of the body-in-context. For example, Lock uses local biologies to explain that menopause is, “neither a fact nor universal event but an experience that we must interpret in context” (1993, 370); it is, “an active engagement that takes place in the very sinews, nerves, and bones of our bodies” (1993, 372). Both concepts also allow us to consider the irreducibility of bodily sensations to either the biological or the sociocultural; they are premised on an “ongoing dialectic between biology and culture,” as Margaret Lock writes (1993, xxi). How, then, to describe the dynamics of this dialectic, the interplay of culture and biology? Other authors have warned of the limitations of biomedical and cultural models in anthropology, and have argued that the relationship between the two should be rethought (see Lende, Hruschka and Worthman 2005). In their edited volume, Goodman and Leatherman (1998, 25) suggest that critical perspectives will enrich the anthropology of the body in a way that “takes into account the complexities and contradictions of social life and how they influence biology.” “Biology is a socialized biology,” as Richard Levins and Richard Lewontin (1998) succinctly summarize in the foreword. Lock’s (1993, 2001) multifaceted analysis of the interplay of a variety of factors avoids simplistic explanations, describing exactly that sort of biology.

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Throughout her work, Lock takes up the question of power, recommending that anthropologists “explore … the way in which individuals and groups come to embody, accept as natural, and reproduce a world constructed for them by those in positions of power and authority … and at what price to their physical bodies they do this. In other words, how does the corps propre, the ‘lived body’ in MerleauPonty’s idiom … constitute itself as an engaged social being?” (Lock 1993, 381) One limitation of the concept of local biologies is that there is no explanation of what this interplay of culture and biology might look like. Like Goodman and Leatherman, Lock provides no descriptions of the biocultural mechanisms on which the interplay might be based. This missing piece, although it does not fall into the domain of cultural anthropologists, might significantly enrich the discussion of local biologies by overcoming a certain vagueness in its exposition. The difficulty of negotiating this gap is described in Robert Aronowitz’s article discussing the “social patterning of health” (2008a). Aronowitz asks, “How does culture get under the skin?” and suggests that researchers take a social approach that resembles and builds on the labeling theory of the 1960s and 1970s. Duana Fullwiley, in her commentary on the article, criticizes Aronowitz’s approach because it, “strangely oversocializes this interaction, now leaving biology to the wayside” (emphasis in original). She continues: “physiological mechanisms are also both real and constructed, in relation to contextual elements that surround them, interactive circuits, pathways and ‘framings,’ in vitally instructive ways” (Fullwiley 2008, 15; emphasis in original). Fullwiley’s argument builds on Lock’s local biologies, and thus Aronowitz’s answer to Fullwiley’s critique is particularly instructive for this essay. He writes, “we currently do not have credible knowledge with which to trace ‘the thousand threads, fibers, cells and interactions’ … that Fullwiley invokes” (Aronowitz 2008b, 21). I believe this exchange is based on a misunderstanding: Aronowitz takes the biological, which Fullwiley claims to be missing in his article, as important but argues that current models, like previous stress models, reduce poverty or inequality to underlying biological mechanisms. Fullwiley, like Lock, speaks about the complexity of many interactions – social and biological – but does not articulate how those interactions might occur: in other words, how different bodies, mechanisms, and molecules might influence each other.

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There are many possible mechanisms that help illuminate parts of this complex issue. I suggest that the concept of local biologies is a useful framework, especially when articulated through various specific threads of argumentation, acknowledging different partialities. If we acknowledge the value of partiality, the question, “How does culture get under the skin?” can be answered through a variety of research projects. Ian Hacking’s (1998, 1999) notion of biolooping would be one such approach. Biolooping refers to behavioural and classificatory attitudes regarding human health that result in physiological changes (e.g., serotonin levels; see also Sapolsky 1994, 2004). I will suggest that the notion of embodied molecules, based on learning, is one of those frameworks that, in the case of medication taking, considers the sociobiological embeddedness of effect.

T h e S h a p in g o f Bi ology t h ro u g h M e d ic ati ons , Onli ne What exactly are the forces that filter the enormous amount of information on the Internet? How are knowledge and truth regarding medications negotiated on such lists? While some of these forces have been examined in communication studies and other disciplines,8 I want to contribute a different kind of framework for approaching these questions. Elsewhere (Leibing, 2009a, 2009b; Leibing and Tournay 2010), I have discussed hope as an important driving force in filtering information on the Internet. This is especially evident on the List when members discuss stem cell research. When reading the postings, it seems that technologies carrying hope are more positively evaluated by individuals in need of a cure than by people who are less involved. It is nonetheless wrong to imply that those who express hope uncritically advocate any resource offered. One of the (many) mechanisms influencing decisions regarding optimal treatment is the multiplicity of medication-taking experiences within the group and the communal learning that is part of coming to terms with effect. I refer to this as “embodied molecules.” The discussions of medication taking on the List are fuelled by hope, but at the same time also temper excessive hope. This tempering results from the many warnings that circulate on the List and that result from direct experiences of the drugs’ effects. Indeed, these social “push” factors9 (such as hope) can be compared to Émile Durkheim’s characterization of religion: “La religion n’est pas

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seulement un système d’idées, elle est avant tout un système de forces” [Religion is not just a system of ideas, it is above all a system of forces, my translation](1968, 131; emphasis added). The following dialogue shows the incorporation of scientific information to the group’s collective knowledge and the relativizing of that information through the list member’s own experiences. One member begins, “Has anyone tried this?” and then quotes from an article by Mally and Stone (1994): Adenosine is known to inhibit the release of dopamine from central synaptic terminals … Fifteen Parkinsonian patients were treated for up to 12 weeks with a slow release oral Theophylline preparation … The patients exhibited significant improvements in mean objective disability scores and 11 reported moderate or marked subjective improvement. Another List member, a woman with P D , answers: Please keep in mind that Theophylline can be deadly. The drug is used to treat asthma, so perhaps someone who has used it for that purpose could let us know if their P D symptoms decreased. At any rate, folks with cardiac arrhythmias, coronary artery disease or a past history of heart attack would be well advised to avoid this drug. It is not a benign medication. God bless. A female caregiver continues, “It can be a serious stomach irritant, so caveats to anyone with digestive disorders. I know because I’ve taken it for asthma, as has my son. The stomach aches are most uncomfortable.” In social science writing about virtual communities, the impact of cyberinformation on the biology of the individual body is rarely discussed (e.g. Bach and Stark 2005; Bishop 2007). In this regard, Andrew Barry’s (2005) observation about pharmacological matters is relevant. Barry argues that molecules embody information and change identities in different environments: “molecules should not be viewed as discrete objects, but as constituted in their relations to complex informational and material environments” (2005, 52). Besides the dependence of molecules on their biochemical context (cf. Aldridge 1998), there is also the informational context of culture (Hacking 1999) that directly interacts with the biology of the body.

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Nowhere is this clearer than with the cultural determination of a medication’s effects and side effects. As Asha Persson (2004) and others have shown, what generally are called side effects – and thus viewed negatively – can in another context be the primary desired effect. This therapeutic ambiguity of medications acts on bodies that are “hybrids of living material and chemical substances” (Willems 1998, 115–16, quoted in Persson 2004, 62). In this sense, the term “embodied molecules” describes the experienced cultural chemicality of medications. In the case of the List, this means that the experienced effect results from the diversity or congruence of reacting molecules in many individual bodies. Effects stemming from group experiences consequently influence how the informed individual experiences the medication he or she takes. Therefore, the term “embodied molecules” facilitates discussion by linking the following three elements: the materiality of the drug (its molecules), the reacting body, and the sociocultural context in which the effect takes place.

L e a r n in g a n d C u lt ural Chemi cali ty As social scientists have long demonstrated, our bodily sensations are in part learned. Howard Becker’s classic study, Becoming a Marihuana User (1953), shows that to be able to enjoy the effects of marijuana a certain technique has to be learned from others. This includes learning how to perceive effects positively that otherwise might be deemed unpleasant: “The taste for such experience [of marijuana smoking] is a socially acquired one, not different in kind from acquired tastes for oysters or dry martinis” (1953, 53). For individuals with PD, this learning process happens on several levels; it is the body in decline that first of all needs to be understood, and which is then the site of multiple interventions. The following testimony of a caregiver, reprinted in the Canadian journal Parkinson Post (Toews 2002, 21–2), shows how learning – the gathering of manifold information – is part of coming to terms with a changing body: Because Parkinson’s affects every person differently, it was even hard to share experience with others who shared E’s diagnosis. Some have tremors, others don’t. Some feel like their legs are encased in cement blocks, others still go golfing … Every new medication he tried carried its own side-effects, some of which

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were worse than the symptoms. We were constantly bombarded with questions and decisions … Our faith in God, the prayers and emotional support of our family, our church and our friends, and contact with the Parkinson Foundation in Ontario formed the eye of the tornado … I finally reached the right specialists and learned to ask the right questions. I devoured any information available through books, magazines and the Internet. I developed a team of health care workers and tried to keep them informed as to what was going on … Now we have learned to recognize the subtle and not so subtle manifestations of this new intrusion into our lives … E is slowly learning how to live in this new body. Bruno Latour (2004, 206) goes so far as to define the body as “an interface that becomes more and more describable as it learns to be affected by more and more elements.” Latour continues to argue that one should not define the body itself, but rather how one “learn[s] to be affected.” He gives the example of an “odour training program” (for testing fragrances), which allows the trainee to acquire “a nose” that can detect odours that the untrained would not discern. The training kit, “has taught them to be affected, that is effected by the influence of the chemicals” (2004, 207; emphasis in original). The body becomes articulated through this kind of training of the senses and, as Latour argues, does something to the odours themselves.10 Others have shown that this learning process depends on the cultural context in which it is embedded, as in Bates and Edwards’ (1992) study of “ethnic variations” in experiencing chronic pain. The authors argue, “the most frequent statistically significant intergroup differences in pain intensity and in behavioural, psychological, and attitudinal responses to pain are related to differences in ethnic identity and psychological coping style” (1992, 63). But are psychological coping styles learned? Allan Young’s description (1995) of how P T SD (Post-Traumatic Stress Disorder) circulates in an American veterans administration medical center seems to confirm this. Young describes how traumatized veterans literally learn how to fit into the diagnostic category P T S D. “The most conspicuous effect of the center’s ideology is to create a compelling language game, in which the rhetoric of emotion plays a double role … by depositing each of the emotions into an autonomous segment of the mind (a part-self)” (1995, 223). Many other examples exist in  the literature, such as Robert Desjarlais’ (1992) experience of

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partially becoming a shaman and the embodiment of the Himalayan environment, or how Brazilian aspirants of the Afro-Brazilian Candomblé cult learn to become mediums (Landes 1947). Applying these findings to the List would imply that, for its participants, learning new facts about Parkinson research is not exclusively cognitive; it also implies that symptoms may not be exclusively biological. Experience entails the embodiment of knowledge and the communal negotiation of sensation. When the process of optimizing treatment is discussed on the Parkinson list, the bodily sensations of  individuals regarding effect and side effect are shaped through exchange with other evaluators who, jointly, may or may not reach a consensus. The group is able to comprendre ensemble (understand together) (Changeux and Ricoeur 2000, 131), in other words, to come to a consensus necessary for understanding the world as individuals. In the specific case of online communities, the communal negotiations of sensation and effect can be understood as occurring in a cyberbody.

R e t h in k in g C yberbodi es Cyberbodies are generally described as human / computer relationships in which the computer is an extension of the individual. As they are defined here, however, cyberbodies are collective material and symbolic bodies, created by a momentary consensus reached by  the virtual community for or against commonsense knowledge regarding Parkinson’s disease. This consensus, generated through the multitude of experiences of different individuals (e.g., the effects of a certain medication), also affects each individual body that makes up the cyberbody. Effect is therefore at least partly learned and continuously performed (Berg and Akrich 2004). Following this understanding of cyberbodies, the computer is essential in assembling a critical mass of persons to form a disease-linked community but is not part of the cyberbody itself. The making of this kind of cyberbody entails questions of experience, expertise, and authority, as well as the types of information used and discarded, the politics of science (Gottweis 1998), and the practices of hope mentioned above. While the cyberbody affects and effects experience, it does not homogenize experience. A final truth regarding how each medication is to be evaluated and experienced is neither sought nor achieved. A common refrain in the postings of List members is that

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PD is heterogeneous, and the value of “the meds” depends on each person’s specific phenotype. The evaluation and conceptualization of symptoms and effects, however, are negotiated in discussion threads through warnings, disagreements, and recommendations. What is at stake in a cyberbody is twofold: the ways in which scientific and popular knowledge circulate and are evaluated and integrated into each member’s everyday life (Wyatt et al. 2005); and the  ways that the experience of medication taking is shared. The exchange of experiential, embodied knowledge often leads to the question of normality. In the words of a female caregiver: His medication during the first few years was primarily Sinemat; however, during the last 2 years or so, the doctor has prescribed Entacapone (Comptan) to reduce the down time. Since then, symptoms of aggressive behavior, paranoia and hallucinations have profoundly increased. Is this common? What are the alternative treatments? This attention to the side effects – both positive and negative – of the medicines is important because medications used for P D can cause numerous and serious sequelae. The Parkinson Society Canada website (accessed April 2006), for example, includes dyskinesia, hallucinations, nausea, anxiety, and insomnia in a list of the most common side effects. People on the List can additionally read what these medications concretely do to others and compare this with their own experience, as one man with P D suggested: Didn’t realize at first, but the Mirapex was causing me to be sleepy all the time, and even more depressed. I finally figured out that, myself, I didn’t like this drug, and the doc switched me over to Requip. This made a dramatic difference for me. Personal, experiential knowledge often goes beyond official lists of side effects. At the time of my research, for example, neither the Canadian nor the American Parkinson Society websites mentioned pathological gambling as a side effect of Mirapex (see Dodd et al. 2005), yet one member of the List, a man with P D, emphasized its significance and warned others who might also struggle with this kind of effect:

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I was treated with Sinemet along with Mirapex, which caused devastating effects on me and my family. We were not informed and did not realize that this medication could cause a gambling behavior, which I was not able to control. This was replaced by Tasmar and Comtan, which made matters just as bad, if not worse. A cyberbody can therefore integrate sensations into experience (e.g., by describing them as normal) and transform one experience into another (e.g., by calling a gambling problem a side effect). The thorough enumeration of side effects on the List functions as an alternative archive to that assembled in the Physician’s Desk Reference and other pharmaceutical compendia. Furthermore, some side effects recognized by List members require the development or the awareness of bodily sensations that otherwise might have been attributed to personality or questions of morality: “Someone from the [other] list had developed the need to gamble, but also homosexual desires (without being inclined to this before); all this while taking Requip. His wife wanted to divorce him; they had to mortgage their house” (Female caregiver). All in all, List warnings shape symptoms through several mechanisms: warnings might emphasize certain symptoms of which an individual was not aware before reading an online message, they can lead to help-seeking (e.g., switching medications, so that certain side effects disappear) and can make symptoms disappear through the fact that no more attention is paid to them; they become normalized and less worrisome through the input of others on the List. The negotiations regarding effect can be seen in the following exchange. One List member with P D insists that the many medications taken by a majority of P D patients are useless: “So, take a pill to relieve the symptoms of pd, take another pill to relieve the symptoms of the first pill, take another pill to relieve symptoms of the second pill … is that what doctors call treating pd? Cos it’s what I’d call going nowhere.” Another member, however, describes the accumulation of effect and side-effect as “worth it”: I was taking Sinemet / Stalevo 3–4 times a day, plus various other meds … and I developed terrible dystonia. Walking became difficult and painful. I added one 2mg tablet of Artane to each dose of Sinemet / Stalevo and the dystonia improved by about 90% to the point where it’s not really an issue any more. The Artane

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came with side effects of dry mouth, lower blood pressure, a little dizziness when standing up, and light headedness at times. But the trade-off was well worth it. Studies on the effects of medications show that “the body’s response to certain types of medication is in constant flux, affected by expectations of treatment, conditioning, beliefs, and social cues” (Silberman 2009). The ways in which groups (online groups, experts, the media) perceive and communicate effect have a concrete impact on an individual’s biology. The embodiment of molecules has become an issue in more recent studies of placebos. However, in these studies the focus has been mainly on large-scale pharmaceutical and clinical trials and less on how individuals themselves shape and embody effect (e.g., Colloca and Benedetti 2005, Lakoff 2002).

D is c u s s i on Concepts of embodied molecules and local biologies aim to overcome the deeply anchored separation of culture and biology. Both concepts have their limitations. Local biology, for example, is sometimes too broad for specific questions, and the term local may unfortunately still imprison someone within a stereotypical ethnic biology, putting too much emphasis on the local as culture, although ill health might be much more related to questions of class and power. As Lawrence Kirmayer (2006) recently reminded us, “local biologies – we are not quite there, yet” referring to the problematic issue of defining the local. However, it is the role that culture plays in the shaping of biology that is the intriguing aspect of thinking about the relationship of biology and culture, something Margaret Lock has developed and illustrated in such rich ways. Maybe we will never be able to do full justice to the notion of local biologies, but it is doubtless good to think within contemporary medical anthropology. Both local biologies and embodied molecules compel us to reconsider a number of biological and social reductionisms. However, instead of carefully avoiding any potential reductionism, it could be argued that an analysis of the combination of different reductionisms or partialities (defined as exploring partial biocultural mechanisms) could be a possible pathway to a richer understanding of a cultural biology. Embodied molecules is one suggestion for such a partiality.

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no t e s 1 “MéOS” is the abbreviation for Médicaments comme objet social; see http://www.meos.qc.ca. 2 Some of the research material discussed in this essay has been included in a previous publication (Leibing 2009b). 3 “Parkinson’s disease (PD) is a progressive movement disorder marked by tremors, rigidity, slow movements (bradykinesia), and posture instability … Usually beginning in a person’s late fifties or early sixties, Parkinson disease causes a progressive decline in movement control, affecting the ability to control initiation, speed, and smoothness of motion. Symptoms of PD are seen in up to 15% of those ages 65–74, and almost 30% of those aged 75–84. Most cases of PD are sporadic. This means that there is a spontaneous and permanent change in … the building blocks of genes. Sporadic mutations also involve unknown environmental factors in combination with genetic defects. PD affects approximately 500,000 people in the United States, both men and women, with as many as fifty thousand new cases each year” (Medical Dictionary Online 2008). 4 The notion of a bioidentity is, of course, redundant since the biological is always part of one’s identity (and vice versa). My intention with the use of this term is to emphasize the interplay of biology and identity, an interplay that is often neglected when talking about issues related to identity. 5 Meissner et al. (2011, 1785) write: “The question whether and how human beings can activate this sort of inbuilt ‘endogenous pharmacy’ is of utmost interest for all areas of medicine. It is important to understand how individuals can systematically harness innate, environmentally and / or culturally promoted placebo mechanisms for enhancing clinical outcomes, improving their health and well-being, and reducing harmful effects. Therefore, the learning perspective may have innovative implications for a deeper and better knowledge of the placebo phenomenon in science and healthcare.” 6 By far, the majority of comments were copy-and-paste messages about news found in the media related to PD, often followed by a discussion as to whether to believe or not believe the information. 7 Atwood Gaines’ earlier use of the term “local biologies” refers explicitly to cultural and historical variations in the interpretation of health and illness (1987). 8 Other factors, such as the influence of the pharmaceutical industry as a knowledge producer (e.g., Healy 2006), and / or trust in and repetition of the information on the web (see Nettleton 2005 for an overview) have been well documented.

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9 Ian Hacking (1998) would call these social forces “vectors.” 10 In a similar vein, I have argued elsewhere (Leibing 2006) regarding the controversial exhibition of plastinated corpses, called “BodyWorlds,” that sensations as diverse as disgust and joy can be felt when regarding the same kind of object, depending on the learning process involved – a process that goes beyond the cognitive acquisition of knowledge and rules.

R e f e r e nce s Akrich, M. and C. Méadel. 2002. “Prendre ses médicaments / Prendre la parole: Les usages des médicaments par les patients dans les listes de discussion électroniques.” Sciences Sociales et Santé 20(1): 89–116. Aldridge, S. 1998. Magic Molecules, How Drugs Work. Cambridge: Cambridge University Press. Aronowitz, R. 2008a. “Framing Disease: An Underappreciated Mechanism for the Social Patterning of Health.” Social Science and Medicine 67: 1–9. – 2008b. Rejoinder to commentaries on “Framing Disease: An Underappreciated Mechanism for the Social Patterning of Health.” Social Science and Medicine 67: 20–2. Bach, J. and D. Stark. 2005. “Recombinant Technology and New Geographies of Association.” In Digital Formations, IT and New Architectures in the Global Realm, edited by R. Latham and S. Sassen, 37–53. Princeton, NJ : Princeton University Press. Barry, A. 2005. “Pharmaceutical Matters: The Invention of Informed material.” Theory, Culture & Society 22(1): 51–69. Bates, M.S. and W.T. Edwards. 1992. “Ethnicity Variations in the Chronic Pain Experience.” Ethnicity and Disease 2(1): 63–83. Becker, H.S. 1953. “Becoming a Marihuana User.” The American Journal of Sociology 59(3): 235–42. Berg, M. and M. Akrich. 2004. “Introduction – Bodies on Trial: Performances and Politics in Medicine and Biology.” Body and Society 10 (2–3): 1–12. Bishop, J. 2007. “Increasing Participation in Online Communities: A Framework for Human–Computer Interaction.” Computers in Human Behavior 23: 1881–93. Castells, Manuel. 2004. The Power of Identity, second edition. Malden, MA : Blackwell. Changeux, M. and P. Ricoeur. 2000. Ce Qui Nous Fait Penser. La Nature et la Règle. Paris: Éditions Odile Jacob.

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Colloca, L. and F. Benedetti. 2005. “Placebos and Painkillers: Is Mind as Real as Matter?” Nature Reviews 6: 545–52. Desjarlais, R. 1992. Body and Emotion: The Aesthetics of Illness and Healing in the Nepal Himalayas. Philadelphia: University of Pennsylvania Press. Dinklage, M. 2002. “Weiblich, Mitte 30, ein Kind. Parkinson.” Brigitte 12: 102–109. Dodd M.L., Klos K.J., Bower J.H., Geda Y.E., Josephs K.A., and J.E. Ahlskog. 2005. “Pathological Gambling Caused by Drugs Used to Treat Parkinson Disease.” Arch Neurol. 62(9): 1377–81. Durkheim, É. 1968. Les formes élémentaires de la vie religieuse. Paris: PUF. Fox, Michael J. 2002. Lucky Man, a Memoir. New York: Hyperion. Freed, C. and S. Levay. 2002. Healing the Brain: A Doctor’s Controversial Quest for a Cure for Parkinson’s Disease. New York: Times Books. Fullwiley, D. 2008. “Out from Under the Skin: Disease Etiology, Biology and Society: A Commentary on Aronowitz.” Social Science and Medicine 67: 14–17. Gaines, A. 1987. “Cultures, Biologies and Dysphorias: An Essay-Review.” Transcultural Psychiatric Research Review 24(1): 31–57. Goodman, A.H. and T.L. Leatherman. 1998. Building a New Biocultural Synthesis: Political-Economic Perspectives on Human Biology. Ann Arbor: The University of Michigan Press. Gottweis, H. Governing Molecules: The Discursive Politics of Genetic Engineering in Europe and the United States. Boston: The MIT Press. Hacking, I. 1998. Mad Travelers: Reflections on the Reality of Transient Mental Illness. Charlottesville: University Press of Virginia. – 1999. The Social Construction of What? Cambridge, MA: Harvard University Press. Healy, D. 2006. “The Latest Mania: Selling Bipolar Disorder.” PLoS Medicine 3(4): e185, 1–4. Kirmayer, L. 2006. “The Social Life of Antidepressant Medications in Japan.” Paper presented at the MéOS research group, Université de Montréal, Montreal, Canada, 26 September. Kontakos N. and J. Stokes. 2000. Monograph Series on Aging-related Diseases: XI I. Parkinson’s Disease – Recent Developments and New Directions. Public Health Agencies Canada: Chronic Diseases in Canada (online journal) 20(3). http://www.phac-aspc.gc.ca/publicat/ cdic-mcc/20–2/b_e.html. (Accessed July 2008). Lakoff, A. 2002. “The Mousetrap: Managing the Placebo Effect in Antidepressant Trials.” Molecular Interventions 2(2): 72–6.

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Landes, R. 1947 [1994]. The City of Women. Albuquerque: University of New Mexico Press. Landzelius, K. 2006. “Introduction: Patient Organization Movements and New Metamorphoses in Patienthood.” Social Science and Medicine 62(3): 529–37. Latour, B. 2004. “How to Talk About the Body? The Normative Dimension of Science Studies.” Body & Society 10(2–3): 205–9. Leibing, A. 2006. “Seelige Erinnerungen – ein Essay über verkörperte Memoria.” In Verführerische Leichen – verbotener Verfall: “Körperwelten” als gesellschaftliches Schlüsselereignis, edited by L.H. da Fonseca and T. Kliche, 99–112. Lengerich: Pabst Science Publishers. – 2009a. “Tense Prescriptions? Alzheimer Medications and the Anthropology of Uncertainty.” Transcultural Psychiatry 46(1): 180–206. – 2009b. “Lessening the Evils, Online: Embodied Molecules and the Politics of Hope in Parkinson’s Disease.” Science Studies 22(2): 80–101. – 2009c. “From the Periphery to the Center: Treating Non-cognitive, Especially Behavioral and Psychological, Symptoms of Dementia.” In Treating Dementia: Do We Have a Pill for It? edited by J. Ballenger, P. Whitehouse, C. Lyketsos, P. Rabins, and J. Karlawish, 74–97. Baltimore: The Johns Hopkins University Press. – and V. Tournay, eds. 2010. Les Technologies de L’espoir: La Fabrique d’une Histoire à Accomplir. Québec: Presses Universitaires de Laval. Lende, D.H., D.J. Hruschka, and C.M. Worthman. 2005. “Biocultural Dialogues: Biology and Culture in Psychological Anthropology.” Ethos 33(1): 1–19. Levins, R. and R. Lewontin. 1998. “Foreword.” In Building a New Biocultural Synthesis: Political-Economic Perspectives on Human Biology, edited by Goodman, A.H. and T.L. Leatherman. Ann Arbor: The University of Michigan Press. Lock, M. 2001. “The Tempering of Medical Anthropology: Troubling Natural Categories.” Medical Anthropology Quarterly 15(4): 478–92. – 1993. Encounters with Aging: Mythologies of Menopause in Japan and North America. Berkeley: University of California Press. Mally, J. and T.W. Stone. 1994. “The Effect of Theophylline on Parkinsonian Symptoms.” J Pharm Pharmacol. 46(6): 515–17. McLean, A. and A. Leibing. 2007. The Shadow Side of Field Work: Theorizing the Blurred Borders between Ethnography and Life. Boston: Blackwell. Medical Dictionary Online. 2008. Parkinson’s Disease. http://medicaldictionary.thefreedictionary.com/Parkinson+disease. (Accessed 5 May 2008).

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Meissner, K., Kohls, N. and L. Colloca. 2011. “Introduction to Placebo Effects in Medicine: Mechanisms and Clinical Implications.” Philos Trans R Soc Lond B Biol Sci. 366(1572): 1783–9. Mendez, I., A. Viñuela, A. Astradsson et al. 2008. “Dopamine Neurons Implanted into People with Parkinson’s Disease Survive Without Pathology for 14 Years.” Nature Medicine 14(5): 483–5. Nettleton, S., B. Roger, and L. O’Malley. 2005. “The Mundane Realities of the Everyday Lay Use of the Internet for Health, and their Consequences for Medical Convergence.” Sociology of Health & Illness 27(7): 972–92. Oudshoorn, N. and A. Somers. 2007. “Constructing the Digital Patient: Patient Organizations and the Development of Health Websites.” In Biomedicine as Culture, edited by R.V. Burri and J. Dumit, 205–21. New York: Routledge. Pearce, C. 2008. “The Truth about Baby Boomer Gamers: A Study of Over-Forty Computer Game Players.” Games and Culture 3(2): 142–74. Persson, A. 2004. “Incorporating Pharmakon: HIV , Medicine, and Body Shape Change.” Body and Society 10(4): 45–67. Rabinow, P. 1996. Essays on the Anthropology of Reason. Princeton, NJ : Princeton University Press. Sapolsky, R.M. 1994. Why Zebras Don’t Get Ulcers: A Guide to Stress, Stress-Related Diseases, and Coping. New York: W.H. Freeman. – 2004. “Social Status and Health in Humans and Other Animals.” Annual Review of Anthropology 33: 393–418. Silberman, S. 2009. “Placebos are Getting More Effective. Drugmakers are Desperate to Know Why.” Wired 17 (24 August), http://wired.com/ medtech/drugs/magazine/17–09/ff_placebo_effect?currentPage=all, (Accessed August 2011). Toews, A. 2002. “The Calm After the Storm: When ‘Bad’ Things Happen to ‘Good’ People.” Parkinson Post 2(2): 20–1. Wahlberg, A. and T. Streitfellner. 2010. “Stem Cell Tourism, Desperation and the Governing of New Therapies.” In Les technologies de l’espoir. Les débats publics autour de l’innovation médicale – un objet anthropologique à définir, edited by A. Leibing and V. Tournay, 25–45. Québec: Presses Universitaires de Laval. Willems, D. 1998. “Inhaling Drugs and Making Worlds: A Proliferation of Lungs and Asthmas.” In Differences in Medicine: Unravelling Practices, Techniques, and Bodies, edited by M. Berg and A. Mol, 105–18. Durham: Duke University Press. Wyatt, S., A. Hart, and J. Smith. 2005. “The Digital Divide: Health Information and Everyday Life.” New Media & Society 7(2): 199–218.

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Young, A. 1995. The Harmony of Illusions: Inventing Post-Traumatic Stress Disorder. Princeton, N J: Princeton University Press. Ziebland, S. 2004. “The Importance of Being Expert: The Quest for Cancer Information on the Internet.” Social Science and Medicine 59: 1783–93.

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9 Digital Landscapes of Health Naomi Adelson

In early August of 2009 The Globe & Mail newspaper reported that Canadian Prime Minister Harper and then federal Industry Minister Tony Clement held a small, private dinner in Ottawa with the CE O s of two of Canada’s largest digital technology industries of the time, R IM and Nortel. As a result of that meeting, Mr Clement publicly promised a “competitive and thriving digital economy” followed very soon after by Prime Minister Harper’s announcement of his socalled major “rollout of a rural broadband strategy” (McCarthy 2009, B1). Despite the ensuing collapse of Nortel and the recent decline of R I M and their effects on Canada’s digital technologies future, I was struck by this high level of government involvement in the information and communication technology (I CT ) industry as well as by how far that dinner on the hill was from the contemporary reality of the remote Canadian north. Reading this news while on a small local carrier flying me into a community still without road access, I contemplated how long it might be until the remote north would be considered a priority for federally-funded broadband support.1 The technological infrastructure is so limited where I was heading that individuals and businesses must purchase private satellite internet relay systems in order to get a service which is currently, at its very best, only about twenty-five times faster than dialup. And yet, even with these limitations, digital technologies are, like earlier communications technologies before them, transforming the physical and social landscapes of this small community and the remote north more generally (cf. Roth 2005). Following the dinner on Parliament Hill, a forum on the digital economy was organized at which the keynote speaker, “urged both

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government and industry to aggressively pursue another key building block in the country’s digital infrastructure: e-health” (McCarthy 2009, B4).2 In what way is e-health so closely connected to the viability of the country’s digital economy? And, what are the implications of those connections between technology and health? From where I sat – quite literally, a few thousand metres above the vast boreal shield and on into the taiga region of subarctic Québec – I wondered, in particular, about the significance of digital technologies in the context of First Nations’ health policies, practices, and beliefs as well as in relation to the social, cultural, and political impacts and implications of health I C Ts. Those larger questions are the foundation of my present study3, and have moved me into the virtual world of e-health and the use of the Internet for health related matters more generally amongst Aboriginal peoples in Canada. These questions led me back onto that turboprop plane heading up to a small and geographically remote northern First Nations community, a small Cree village where I have been conducting ethnographic research for twenty years. ICTs are at the core of today’s transformative global realities as the “social and material processes and cultural commitments” through which, as Anna Tsing notes, “localities and globalities come into being” (2008, 86). Within First Nations’ context, the use of new communications technologies and content is an ever-growing, innovative, political, social, and daily reality. This is especially significant for individuals living in geographically remote locales as they are increasingly more heavily bound to and affected by these technologies (despite any structural limitations) and, through them, new modes of communication and representation (Niezen 2005; Tafler 2000; cf. Hakken 2004). Cyberactivism, for example, is an established strategy for indigenous groups worldwide that use ICTs to expand their reach to other indigenous nations and communities and to the wider public (Dyson, et al. 2007; Ebare 2006; Landzelius 2006; Miller and Slater 2001; Niezen 2005; Speed 2002; Warschauer 1998). As much as virtual assemblies, linkages, and communications are being studied in relation to contemporary group identity formations and expressions (Appadurai 2000), we must similarly pay attention to the use of ICTs as people incorporate them into their everyday lives. In this essay, I explore health-related ICTs as a form of biotechnology. E-health and the Internet are part of the technological transformation of northern First Nations health practices and as such

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constitute central features on the transforming landscape of Aboriginal health today.4 The e-health and social networking case studies presented here offer insights into ways in which communications technologies are not just transforming geographically remote landscapes but, at the same time, creating new spaces for the negotiation of concepts and practices of health. E-health, for example, is a densely figured link between technologies and bodies that is significantly decentring entire segments of First Nations health care management while the Internet is already transforming social health landscapes. Computers have not only become integral to everyday life worlds; the Internet also creates evocative new spaces that continue to break down boundaries between physical and virtual spaces (Turkle 1995; 2011; Gershon 2010). The new relationship we have to technology is not that of a clash for primacy of human over machine but a relationship of increasingly enhanced coexistence such that “cyberspace and its virtual worlds have become increasingly strong sinews of our social worlds” (Fischer 2003, 53; cf. Escobar 1994). As ICTs permeate our daily lives with new languages, modalities, and metaphors of communication, as we now Google, blog, surf, or tweet, we must pay closer attention to these “technologies in practice – their differential development, transfer, and application, relationship to politics and economics, national interests and dominant values, and their impact on individuals at large” (Lock 2003, 87). In her work, Margaret Lock emphasizes technologies of biomedical observation and intervention, located in places of technological innovation, laboratories, clinics, society, and the state. Biotechnologies are, in other words, “sociotechnical systems,” always created and made meaningful within larger networks of historical, social, economic, and political discursive practices (Lock 2000; Lock and Nguyen 2010). As health-related technological engagements move away from the clinic and into communities and households, the locus of inquiry must also shift. ICTs, as technologies that administer, communicate, and influence health management and health seeking practices, are similarly implicated in sociotechnical networks as they are implicated in the ways concepts such as health are decontextualized, objectified, and normalized. As we may casually Google and surf, seeking pleasure or relaxation in those very acts or searching specifically for health resources, we must be attentive to the ways in which (health) information and communications technologies and structures are socially, culturally, and politically embedded within wider networks of

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management, power, meaning, and care. How, for example, are these technologies funded, distributed, accessed, and used? More specifically, as new forms of technology mediate one’s sense of being, place, and identity, there is a greater need to study the ways in which individuals engage these technologies and they, us. Far from being deterministic, technological tools and their attendant practices exist and flourish in particular contexts creating new spaces for how one understands, negotiates, and acts upon formulations of health. Lock’s exploration of technologies in practice underpins my examination of the role of health ICTs in a First Nations context. Through that framework, I consider the ways in which local (women’s use of the Internet) and national (e-health strategies) engagements with ICTs mediate the physical, social, and political landscapes of First Nations’ health. Health ICTs, readily understood as technologies of surveillance, regulation, and intervention are technologies that are realigning health practices – at times taking up, at times setting aside the biomedical authority with which they are associated.

T h e l it t l e “ e ” t hat could: F irs t N at io n s ’ e-health Electronic health, or e-health as it is commonly referred to today, generally implies the assimilation and rapid communication of health information across distances (Oh, Rizo, Enkin, and Jadad 2005). The term originated in the corporate world as marketers pushed to integrate e-commerce and e-business into the health care sphere (Eysenbach 2001). As it moved beyond the business world, e-health integrated these new technologies of commerce and, in the process, a rationalized conceptualization of health. As Eysenbach (2001, e20) explains: E-health is an emerging field in the intersection of medical informatics, public health and business, referring to health services and information delivered or enhanced through the Internet and related technologies. In a broader sense, the term characterizes not only a technical deployment, but also a state-of-mind, a way of thinking, an attitude, and a commitment for networked, global thinking, to improve health care locally, regionally, and worldwide by using information and communication technology.

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The “e” in e-health, continues Eysenbach, also presumes “efficiency, enhancing quality, evidence based, empowerment, encouragement, education, enabling, [and] extending” (2001, e20). The “state-ofmind” of e-health is about far more than the rapid communication of health information; it is about a technology that effectively encapsulates processes of population surveillance as productive and fiscally efficient health records management. It is also, as Eysenbach importantly says, about empowerment. In Canadian First Nations, e-health is fundamentally tied to larger issues of ownership and control of health processes and, through that, the empowerment of First Nations peoples and communities. When integrated, funded, and functioning, resources available through an e-health network have tremendous potential for community health advocacy, development, and improved levels and quality of care (cf. Marshall, Taylor, and Yu 2003). Examples from various regions of Canada as well as northern Australia point to the way in which integrated ICTs can empower people locally even  in the most remote regions of the country as they close the urban / rural / remote digital divide and work toward developing or enhancing community health systems (Gideon 2006; Hunter, Travers and McCulloch 2003; Sanderson 2008; Kakepetum 2005). Valerie Gideon views e-health as an “empowering” mechanism for indigenous peoples and an essential component of “self-determination” (2006, 62, 66). E-health, says Gideon, has the support of indigenous peoples and their representative governments in part because of a convergence between high ICT adoption among indigenous peoples and current heath policy directions. First Nations e-health networks in Canada are expanding rapidly, fuelled further by the Canadian government’s stated commitment to “support, educate, inform and connect health care professionals and the people they serve” in order for “Canada’s First Nations and Inuit communities to be connected, informed and ultimately healthier … through innovative e-Health partnerships, technologies, tools and services” (Health Canada 2008).5 Rather than taking her cue solely from the federal government’ initiatives, Gideon explicitly links e-health to self-determination, highlighting that, while it can address health inequities by offering more efficient, community-based services or reducing health-related costs of patient transfers, e-health ultimately serves, “as a mechanism to gather and keep health status records” which can then be leveraged to “hold the federal government accountable” (2006, 66).

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The Assembly of First Nations (A F N ), as the largest and highly influential national political body representing status First Nations in Canada, has expressed its commitment to health related I CT s at national, policy, and individual levels as part of an overall strategy to control First Nations health through, in part, the management of health information. Although they and others make it clear that onsite facilities, services, and personnel cannot be replaced by longdistance resources, the A F N is taking e-health very seriously in their continued pursuit of improved health and social services for First Nations peoples. To that end, the A F N Health and Social Secretariat, for example, outlines nationwide health communications advancements, linking improvements in health with technological advances as part of a larger vision of a First Nations controlled health and health information management (A F N, 2011). National and regional First Nations, Inuit, and Métis health agencies, services, and organizations are also now all web-based and the list of electronic resources continues to grow. Of particular note is the National Aboriginal Health Organization’s website which is a comprehensive leading example of innovation in the collection and dissemination of First Nations, Inuit, and Métis health and wellness news and information to a broad online community. With a commitment to the integration and communication of biomedical as well as traditional medical and spiritual knowledge and practices, the N AH O website’s extensive online resource and communications network reflects that organization’s dedication to its communities in its integrative model of data collection and dissemination. As an example of a local innovation in health I CTs as tools of empowerment, I draw on a 2009 h1n1 vaccination campaign that was launched on Facebook, Twitter, and local Cree language radio stations in the James Bay region of northern Québec. As a result of this inventive media campaign, 84 per cent of people over six months of age were vaccinated, whereas the overall provincial average was only 57 per cent (Morrow 2009). An integral element of the campaign, as described by Iain Cook, a former communications director with the Cree Board of Health and Social Services, was the recruitment of a well-known and popular individual to creatively and inclusively use a Facebook page to get the message out regarding vaccination and hygiene initiatives. The individual made a video that circulated quickly across the vast, connected network and, said Cook, resulted in the higher than anticipated vaccination rate. The

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focused, culturally engaged, and locally developed initiative highlighted in the Facebook campaign aligned with a broader social sense of well-being as a community process and a powerful politics of action. Facebook, in particular, was seen as a particularly effective health ICT as it generated a forum for community engagement with multiple paths for dialogue and exchange (I. Cook, personal communication, 2011). The campaign, in the words of James Bobbish, the director of the Cree health board, “proved what we can do. We need flexibility in order to accommodate geographical and cultural differences. We work well with the government and others on common issues” (quoted in Morrow 2010). Even with these tremendous successes and regardless of the political motivation that drives them, there are structural limits to the integration of health I C T s. I C Ts are neither smoothly integrating into communities nor are they, even when present, a remedy to already challenging health concerns. Studies of levels of connectivity, funding, and staffing all highlight a serious number of technical, personnel, privacy, ownership, access or cost-related problems, and limitations as well as the very real limits of care e-health can offer (Alexander 2005a, b; First Nations Centre 2005; Inuit Tapiriit Kanatami 2008; Jennett et al. 2004; Kamira 2007; Kuran 2001; Peddle 2007). Some also argue that health I CT s de facto further isolate those living in remote regions by limiting access to local health resources (Sinha 2000). And, as Alexander (2005a) notes, e-health technologies typically presume a unidirectional flow of information into communities and, in that process, limit the degree of community-driven or culturally sensitive initiatives (see also Buchanan et al. 1999; Starling et al. 2005). The same technology that is viewed as having the potential to transform the health landscape of First Nations in Canada can at the same time be limited and limiting. And yet, despite its considerable shortcomings and with its latent potential to regulate populations, e-health evokes transformative and creative potential. E-health technologies can realign, integrate, and disseminate different, and specifically indigenous, practices in conjunction with or separate from a standard biomedical orientation. E-health is a powerful “way to think” in part perhaps because of the biomedical standard of normalized health it passively articulates. But more importantly, seen by many First Nations and Aboriginal communities as empowering and enabling, e-health technologies are deeply embedded within

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larger social, economic, and political frameworks as a major tool in the expansion of Aboriginal control of health and social services. E-health technologies will continue to expand throughout Aboriginal Canada as long as there is increasingly faster and more efficient connectivity, enough trained personnel, and available funds. National e-health initiatives, websites, and other health communication networks are all examples of Lock’s “technologies in practice,” reflecting multiple levels and fields of engagement of health IC Ts as technologies overlap with, drive, and mediate health-related political and social agendas and, with them, modalities and meanings of care. It is arguably at exactly these powerful points of “deterritorialization and decentralization of vital systems” (Fischer 2003, 53) that we see the transformative potential of health I CT s and the social and political valuations imbued in these technologies.

F ac e b o o k N at io n : E x pa ndi ng Hori zons o f H e a lt h & C o m m uni cati ons E-health is only one aspect of a larger twenty-first century transformation of the Canadian north as ICTs continue to expand the horizons of digital engagement. While e-health primarily transfers information into communities, the Internet has become the tool of choice for communicating within and between communities and beyond. While still not uniform across First Nations communities, there has been considerable growth in connectivity over the last decade. As of 2004 (Aboriginal Canada Portal 2005), almost 95 per cent of First Nations communities in Canada already have some – although at times highly differential – access to the Internet, whether at home or at community access points (such as Native Friendship Centres).6 These numbers reflect degree of access, not use. Indeed, despite regular reviews of connectivity, few studies to date have examined how First Nations men or women are using these technologies. In the only study available on First Nations women’s use of the Internet in Canada, the Native Women’s Association of Canada (NWAC) found that, when available and accessible, the technology was beneficial, empowering, and positively contributed to women and their communities (Golic 2004; see also Smillie, nd and Womyn’s Voices, 2006).7 The community where I conducted my field research on women’s use of the Internet for health-related issues is physically remote,

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located 1,400 kilometres north of Montreal, Québec.8 The village of Whapmagoostui is considered remote not only because of its distance north of any major population centre but also, and predominantly, because it has no direct road access (travel in or out is by plane or, less frequently, boat). The total Cree population of this village is approximately 900, with the majority well under forty years of age. Virtual access to Whapmagoostui today, on the other hand, is getting faster and somewhat more efficient, with Internet availability and speed expanding regularly since its very limited arrival. With initially only extremely limited Internet connectivity in 1996 (dial-up access available only to band office executives), by 2006 households could purchase access to an early and relatively slow two-way (upload / download) satellite service. Of the 188 household units in Whapmagoostui9, approximately 140 (75 per cent) have some form of Internet access. This number is significant in part because it reflects the high degree of household connectivity but also as a reminder that there is no simple public access to the Internet for those who do not have computers in their homes. With no community access points such as a Friendship Centre, Internet café, or library, people have very few alternatives to home access. Those who work in, for example, the band office, police station, or school would have access to the Internet for work-related communications but not, typically, for personal use. It is important to remember too that in this small community the local radio station and telephone10 remain the most immediate means of communication and source of local information. People will turn first to the radio in times of crisis when, for example, they await critical updates on community members who have been transported south for emergency medical care. Local radio, computers, landlines, and satellite telephones are the communications technologies of the remote north. The questions that I brought to the young adult women (ages twenty-five to forty) of this community were about how they are currently using the Internet and whether they specifically access it for health-related purposes, as they define them (Adelson, 2000; 2008). I met with young adult women at their workplaces or homes, whichever was more convenient for them given their hectic daily schedules. Comprising one fifth of the women in this age group, the twenty young adult women with whom I spoke are employed at the local government office, school, day care, police services, or radio

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station. All are fluently bilingual Cree and English speakers, although Cree remains their language of choice at home and at work. Given their hectic schedules and limited availability, we spoke quite specifically about their use of the Internet and the role it currently plays in their lives. We spoke primarily in English and exchanged e-mail addresses in order to continue discussions online, if needed. Every woman with whom I spoke regularly accesses the Internet. All but two have at least one computer with Internet access in their homes. Household computers are set up most frequently in the family / living room but might also be in a bedroom or the kitchen – these are, after all, social machines and, more pragmatically, there is no dedicated separate office space in the women’s already full family homes. The computer, like the television or radio, has become part of the household and is, more often than not, shared with children and partners. The women spend time on the Internet each week if not every day, some from home in the evenings or on the weekends, some during the day, if they can. They regularly shop, use instant messaging and e-mail, look for recipes, play games, or, most frequently, share photos with friends and families. Many women also indicated that they regularly search for specific information on the Internet including medical advice, university or college information, weather patterns, maps, and guides for travelling outside of the community. As one woman succinctly put it, “I use it for everything!”11 In a community physically remote from any town or city and with no bookstore, library, or other locally available reference facility, the Internet is an immeasurably rich resource. One woman spoke about searching for products and educational resources for her disabled child, another used the Internet to study weather patterns in advance of family hunting trips, while others planned their shopping excursions out of town in minute detail based on the findings of these searches. Whereas Bebo was the most popular social networking utility just a few years ago, today Facebook has taken over as the social networking site of preference. Like Bebo before it, Facebook has become a favourite addition to other forms of communication, to a large extent because people can share photos and chat more often, more readily, and less expensively to friends and family within and, especially, outside of the community. Lola (a pseudonym), one of the study participants, agreed to let me follow her Facebook communications during a segment of the research period. Like any typical Facebook user, Lola shares a range

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of details about herself on her Facebook page, from the personal to the mundane. Lola writes that she lives for her children, that they have made her who she is today, and that her relationship status is currently “complicated.” She likes, according to her list of Likes and Interests, to chat online, her music preferences are CerAmony and Elisapie, and she likes the movie Twilight and the television program Maamuitaau (on A P T N). Lola has close to 700 Facebook (F B) friends. Lola tells her F B friends: (November 2010) Feeling really unappreciated … why is it, the more you do things for ppl the more they want and when you need them, they turn around and say I can’t, No and I don’t have time … cheez!!! that’s it no more mrs. Dependable … no more!!! Lol (January 2011) Stayin’ home on a Friday nite for once this year … lol (12 minutes later) It’s 10:17 on a Friday night and going to bed sash [trans. done] … funny huh??? … good nite F B world. (The next day) Good day ppl!!! Enjoying my Saturday cleaning and doin’ laundry … [a few hours later] Home is clean and cozy. Caribou stew is done … now for some major laundry folding. Lola is, for all intents and purposes, a typical Facebook user: someone who is regularly tagged in others’ photos, who is invited to play online games, quotes song lines as enigmatic personal statements, offers single line reflections on what is going on in her life at that particular moment, answers friends’ statements, posts pictures, and, while sometimes taking a break from the flow of communications, regularly posts her thoughts, activities, and responses to others. Lola and her friends post in English and, increasingly “Creenglish” (Cree language written phonetically in English). Thirty-three years old with four children ranging from three to seventeen years of age, Lola was at the time going through a trying period with her husband. She now works in her community, just recently back from a short-lived return to school. The children she took with her found the community where her postsecondary school was located too isolating and different from home. Lola returned to Whapmagoostui but plans to eventually get back to her studies. A few months after returning to the community her Facebook entry reads:

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And that’s how the cookie crumbles … lol another chapter closed and Lola is soooo happy!!!! and Free!!!!! Lol (Two days later) “Loving life! and enjoying every minute of it … shit happens but so what … life’s too short to dwell … lol” There are no entries for a while until she returns briefly on March 7 with “oh happy day” and then virtual silence. There have been no entries since March 7. When I checked in with her, Lola was training for a new job and her home computer had broken. She was trying to get it fixed locally but ultimately had to send the computer south with a friend to a Montreal repair shop. When asked how she felt about not having access to her computer, Lola answered with a single word: “Isolated.” Lola’s connection to, and now isolation from, her community of Facebook friends reflects the degree to which this technology is integral – when available – to her social life. Lola uses Facebook to maintain regular contact with her F B world, her network of family and friends who can appreciate and share in her social and family life, and work. Like Lola, all of the women with whom I spoke liked having access to the Internet as both a resource and communications alternative. The relative level of “encroachment” of this technology – in terms of time allotted to it and away from other things (as everywhere else), the higher cost of Internet access in the north, or the cost of the computers – was negligible and mentioned only in relation to how the women are managing as they balance their already strained schedules and budgets. The women spoke positively of the integration of the Internet into their lives and highlighted the many innovative ways in which it has improved communications and access to information as well as offering alternative ways to relax and be entertained. Indeed, the value of the Internet for the women is as much in the act of engagement as it is in the processes and products of their various communications activities. As well, the Internet offers temporary virtual means of escape from their hectic lives in a place where physical escape is otherwise impossible (Adelson 2008). The integration of the Internet into their lives means that they not only have access to a virtual world of information but also to new sites and forms of communication. As much as Lola relies on Facebook as integral to her social network and as the same social networking site is used to communicate health services messages in appropriate and meaningful ways (as seen in the h1n1 example

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above), the Internet is being used to strengthen essential components of relatedness and social well-being.

D is c u s si on IC Ts are an integral part of life in remote northern communities. I have drawn upon two specific examples of health related I CT s to reflect upon the ways in which information and communications technologies generate new “spaces” of “health” as social networks and sites of health information shift the locus of health management and health seeking behaviours (Foucault 2003; Mol 2002). The young adult women of Whapmagoostui reflect a generation that can simultaneously inhabit multiple worlds, fundamentally redrawing the boundaries of the local as their networks of relations and resources expand via the Internet. The integration of the Internet into their lives means that these young adult women not only have access to a virtual world of information and new sites and forms of communication, but also new activities and places of engagement. Their own imaginative, creative, and resourceful use of the Internet as it is currently available to them, allows the women to take part in social spheres and spaces that are creating, in Appadurai’s terms, “new designs for collective life” (2000, 6). The women were not seeking out substitute realities or decentred identities via the Internet, nor did they presume the technology to be a panacea but rather an enhancement of the local and familiar as they integrate and mediate their physical and virtual spaces. Further, as much as the women continue to value an array of local and land-based practices including their full participation in, for example, the consumption of bush food as part of a sense of health and well-being, they have adopted the latest communications technologies as tools to enhance that fundamental concept (Adelson 2000; 2008). Importantly, through the maintenance and growth of their social networks via the Internet, this new virtual world complements long-established practices of social well-being. Electronic health data is increasingly in the control of national and regional health authorities in Aboriginal Canada. While there may be some concern that with the data-attendant presumptions of biomedical normalcy as “health” are also being transferred. Yet, as much as “new forms of globalization and modernization [bring] the world into greater, but uneven, polycentric, interaction” (Fischer 2003, 7),

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the strategic use of e-health as a tool of empowerment challenges erstwhile presumptions of biomedical normalcy and surveillance through that very technology. For First Nations in Canada, the prefix “e” evokes transformative potential toward the improvement of health services, as it challenges as well as expands how one might think about and interpret health in this context. As the AF N envisions better health outcomes through technological advancements and greater empowerment through the self-management of those technologies and data, First Nations health is practically and ideologically tied to the political and economic health of just such bodies such as the A F N as they transform the networked map of health care in First Nations Canada. It will be important to continue monitoring the way in which e-health initiatives move into, through, between, and out of First Nations, Métis, and Inuit communities and whether the current optimism of political organizations such as the AF N is not scuttled by the exigencies of federal funding or other resource or political limitations. In this essay, I have examined the processes of engagement with two IC Ts as “technologies in practice” as they fuse with and are mediated through physical, social, and political landscapes of First Nations’ health. The integration of technologies is neither neutral nor evenly accessible or distributed but exists today as a fundamental element in the creative transformation of contemporary First Nations health discourses and practices.

no t e s 1 The federal government’s interest in the furthest reaches of the remote north is, without doubt, increasing in parallel with the increased surveillance and management of Arctic waterways and lands. This does not, however, translate into infrastructure funding throughout the vast regional networks of communities of northern Canada. 2 E-health was defined in the article as: “the use of technology to improve productivity in the health sector through electronic records.” 3 This research was funded by the Social Science and Humanities Research Council of Canada. I also gratefully acknowledge the contributions and discussions shared on this topic with Michelle Wyndham-West, Daniela Heil, Gaynor Macdonald, and Pamela Wakewich.

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4 A third health I CT is telemedicine, sometimes referred to as tele-health. Telemedicine is used primarily by health professionals by remotely linking them with community health centres so that individuals can be “examined” across distances. Telemedicine is emerging as a central component in contemporary long-distance medical practice and is increasingly being used as a form of health care in northern and remote First Nations communities (for example, www.telemedicine.knet.ca). Telemedicine is not used in Whapmagoostui although there are regular consultations by phone with medical personnel at a distance from the community. 5 E-health, according to the federal government, includes first the enhancement of connectivity and then telehealth and health information systems and services to support service delivery as well as facilitate online access for individuals in rural and remote communities. E-health largely comprises services for health care providers including diagnostic support, virtual libraries, prescription support, and continuing education (Health Canada 2008). 6 The report further notes that infrastructure does not guarantee access or use and that appropriate training, support, and funding are required to ensure the adoption of the technology (Aboriginal Canada Portal 2005). 7 The study that I have undertaken here stems from earlier work I conducted with women in this community (Adelson 2008). I have therefore only studied women’s use of the Internet to date (see DiMaggio et al. 2001; Miller and Slater 2000; Morrison 2000; Savard 1998; Taffler 2000). Other studies of non-Aboriginal remote- and rural-dwelling women’s access to and use of ICTs corroborate the findings of the Report on Aboriginal Community Connectivity Infrastructure (2005) with regard to high use when accessible and further indicate that there are social and economic rewards of ICT use for women in particular (Aitkin 2002; Campbell 2004; Singh 2001). 8 This project emerged out of earlier work on women and concepts and valuations of stress (2008), and why I continued to focus exclusively on women. 9 Information drawn from Whapmagoostui First Nation census data (2008) and personal communication with S. Gilpin, Cree Housing (2009). The 188 households exclude three trailers, three social housing units, eleven Cree Health Board units, and the twenty-seven public buildings. 10 There is only first generation, highly limited northern cell phone technology in the community – having just emerged out of its test phase – with emergency and bush satellite mobile phone service providing comprehensive coverage this far north.

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11 That said, women never mentioned accessing sites such as the one set up by the Public Health Department of the Cree Board of Health and Social Services of James Bay (http://www.creepublichealth.org), a site that is full of resources for individuals looking for general public health-related information such as addictions, dental health, mental health, gambling, and, more generally, women’s health. Each topic further leads to various resources, including helpline phone numbers, videos, audio feeds, and text.

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Dyson, L.E., Max A.N. Hendricks, and S. Grant, eds. 2007. Information Technology and Indigenous People. Hershey, PA : Information Science Publishing. Ebare, S. 2006. “First Nations Remote Communities Connectivity and Health: Identifying Opportunities and Challenges for British Columbia.” http://www.arago.cprost.sfu.ca/smith/research/fncr/Health. pdf. (Accessed 9 November 2009). Escobar, Arturo. 1994. “Welcome to Cyberia: Notes on the Anthropology of Cyberculture.” Current Anthropology 35(3): 211–31. Eysenbach, G. 2001. “What is e-Health?” Journal of Medical Internet Research 3(2): e20–2. First Nations Centre (N AHO). 2005. First Nations Tele-health: A Primer for Strategic Planners. Ottawa: Author. Fischer, M. 2003. Emergent Forms of Life and the Anthropological Voice. Raleigh, N C: Duke University Press. Foucault, M. 2003. The Birth of the Clinic. London: Routledge. Gershon, I. 2010. The Break-Up 2.0: Disconnecting over New Media. Ithaca: Cornell University Press. Gideon, V. 2006. “Canadian Aboriginal Peoples Tackle e-Health.” In Native on the Net: Indigenous and Diasporic Peoples in the Virtual Age, edited by K. Landzelius, 61–79. London: Routledge. Golic, J. 2004. “A Report for N W AC: Aboriginal Women and the Internet Report.” http://www.womenspace.ca/equality_book/section_3_aboriginal. htm. (Accessed 20 August 2005). Government of Canada 2005. “2004 Report on Aboriginal Community Connectivity Infrastructure.” http://www.aboriginalcanada.gc.ca/ connectivity. (Accessed 4 April 2009). Hakken, D. 2004. “‘Non-Western’ Studies Of Cyberspace Identity Formation.” Antropologi Indonesia 73: 32–9. Health Canada. 2008. “First Nations, Inuit and Aboriginal Health.” http:// www.hc-sc.gc.ca/fniah-spnia/services/ehealth-esante/index-eng.php. (Accessed 10 October 2008). Hunter, E., H. Travers, and B. McCulloch. 2003. “Bridging the Information Gap: I T and Health in Indigenous Populations.” Australasian Psychiatry 11: S51–6. Inuit Tapiriit Kanatami. 2008. “07/08 Annual Report.” Ottawa: Author. Jennett, P.A., R.E. Scott, L. Affleck Hall, D. Hailey, et al. 2004. “Policy Implications Associated with the Socioeconomic and Health System Impact of Telehealth: A Case Study from Canada.” Telemedicine Journal and E-Health Volume 10(1): 77–84.

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org/news/cree-health-gets-kudos-world-class-h1n1–vaccination-effort. (Accessed 12 March 2011). Niezen, R. 2005. “Digital Identity: The Construction of Virtual Selfhood in the Indigenous Peoples’ Movement.” Comparative Studies in Society and History 45(2): 532–51. Oh, H., C. Rizo, M. Enkin, and A. Jadad. 2005. “What Is e-Health: A Systematic Review of Published Definitions.” Journal of Medical Internet Research 7(1): 1–11. Peddle, K. 2007. “Telehealth in Context: Socio-technical Barriers to Telehealth Use in Labrador, Canada.” Computer Supported Cooperative Work 16: 595–614. Roth, L. 2005. Something New in the Air: The Story of First Peoples’ Television Broadcasting in Canada. Montreal: McGill-Queen’s University Press. Sanderson, B. 2008. “How Telehealth Enhances Care in Canada’s Aboriginal Population.” Paper presented at Insight Information Second Annual Aboriginal Health Conference. http://www.inconference. insightinfo.com/rto.asp. (Accessed 23 September 2008). Savard, J.F. 1998. “A Theoretical Debate on the Social and Political Implications of Internet Implementation for the Inuit of Nunavut.” Wicazo Sa Review 13(2): 83–97. Singh, S. 2001. “Gender and the Use of the Internet at Home.” New Media & Society 3(4): 395–416. Sinha, A. 2000. “An Overview of Telemedicine: The Virtual Gaze of Health Care in the Next Century.” Medical Anthropology Quarterly 14(3): 291–309. Smillie, C. nd. “Is the Internet a Useful Resource for Indigenous Women Living in Remote Communities in Canada, Australia and New Zealand to Access Health Resources?” Unpublished manuscript prepared for the National Network for Aboriginal Mental Health, Montreal. Speed, S. 2002. “Global Discourses on the Local Terrain: Human Rights and Indigenous Identity in Chiapas.” Cultural Dynamics 14(2): 205–28. Starling, R.N., C. O’Connell, and S. Couzos. 2005. “NA C C HO GP Network: Enhancing Communication in Aboriginal Health.” Australian Family Physician 34(10): 849–50. Tafler, D. 2000. “The Use of Electronic Media in Remote Communities.” Australian Aboriginal Studies 1/2: 27–38. Tsing, Anna. 2008. “The Global Situation.” In The Anthropology of Globalization: A Reader, second edition, edited by J.X. Inda, and R. Rosaldo, 66–98. Malden, M A: Blackwell.

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Afterword: Seeing Like an Anthropologist Margaret Lock

As a small child one of my prize possessions was a shrapnel collection composed of pieces of tangled metal that had been scattered about the town of Orpington where I grew up. This debris was left by bombs fallen short of their London targets after the nightly air raids that took place, starting with The Blitz in 1940, and culminating in rocket attacks in 1945. The second to last rocket of the war fell on my family’s house – we were eating breakfast at the time. Neighbours were killed, but my family survived albeit with major injuries. Like the majority of people in my town, I passed many nights sleeping in an air-raid shelter during the war or was rushed under the dining room table behind blacked out windows when the air-raid siren sounded early while we were still eating our meager, rationed dinner. One particularly memorable night, we watched London go up in flames. We kids would crawl out in the mornings after a bombing to view the latest destruction and took the opportunity to add to our shrapnel collections that we proudly showed off and traded with each other – weird little prototypes of rubbish art. Those nights were associated with a terrible fear that dissipated a little during the school hours passed in communal air-raid shelters. It was there that we learnt that life could be other than the ones we were living; that war, violence, destruction of our homes, death of our relatives and neighbours, and eating the dried eggs and milk that our mothers hastily prepared for breakfast did not exist everywhere. Of course, the full extent of the abominations of the Second World War in Europe only became known to us some years later, cementing painful childhood memories but equally causing reflection about bigotry, the lust for power, and the death and destruction that

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5 Margaret Lock with two historians of medicine at a Kyoto temple, 1987. (Courtesy of M. Lock)

inevitably results. In part as a result of those early experiences, a desire was kindled in me to get away from the drab postwar life of England and to travel widely, not merely as an adventurer but in what proved, of course, to be a futile hope of finding places where people lived together without such violence. My secondary education took place in a grammar school for girls. The expectation was that we girls would almost without exception become secretaries, primary school teachers, and, most commonly, housewives. Receiving no guidance about a career choice other than suggestions that appalled me, and being reasonably athletic, I announced that I would become a physical education teacher. This meant that I was funnelled into the science stream to do biology, physics, and chemistry in preparation for teacher’s training college. Fortunately, by the age of eighteen, it dawned on me that teaching hockey and tennis to unruly girls would not be very satisfying. No one in my family had ever been to university, and each year only one or two girls from my school were allowed to apply for university entrance. Even so, probably in part due to the intellectual stimulation provided by the political activities of my parents and their

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friends, I came to the conclusion that a university education was the path to follow. But I had no choice about what to study at this juncture; in the British system in those days the matter of a concentration at university was already irrevocably settled by the time one finished high school. Following a year working in a hospital lab, I was eventually accepted as an undergraduate at Leeds University where I took courses that would lead to a degree in biochemistry. At that time in British universities only around one in ten undergraduates were women, making for a busy social life. Upon graduation I became part of what was known as the brain drain, in which young people from Britain with university qualifications were encouraged to work overseas, particularly in Commonwealth countries such as Canada and Australia. Our airfares were loaned to us for immediate repayment after settling into one of the ex-colonies, where we were set up in appropriate employment. My first sustained brush with medical research took place when I was hired as a lab technician in the Banting Institute at the University of Toronto, Canada. Much of my time was spent experimenting on rats and running electrophoresis gels; after a few months I knew that I either had to take a phd in biochemistry or change direction entirely. I was accepted to do a phd at Boston University but declined the offer and, together with an Australian woman, bought an old car and set off across Canada for the Rockies, the Yukon Territory, Alaska, and then down to Vancouver. The Trans-Canada was a gravel highway in those days, and we became proficient in repairing numerous blowouts. After working in a lab in Vancouver, I settled on the Bay Area as the place to be if one wanted an adventurous, creative life. Berkeley in the 1960s was a city where very few people locked their doors, and trips to San Francisco involved going to readings given by Allan Ginsberg, hanging around the Coexistence Bagel Shop on Grant Street, and occasionally having a night out at the Fillmore. I worked for a while at the University of California, San Francisco (UC SF ), once again as a lab technician, this time in connection with immunological research – a job that I grew to dislike due to its repetitive, boring routines that had little meaning to me because I was not included in discussions about the ultimate objectives of the research. My future husband was also working at UCSF, but he was on his way to Japan in 1964 to do judo training at the Kodokan in Tokyo. (He had been captain of Cambridge’s judo team while an undergraduate.)

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I joined Richard in Tokyo, and after two years we returned to California to undertake phds at Berkeley; the rest, as they say, is history. Richard has been my greatest intellectual stimulation over the nearly five decades that we have lived together, and he has also been my most constructive critic; he avoids premature closure, and encourages engagement with the larger picture, whatever the subject under consideration. While doing course work at Berkeley in preparation for phd research I was immersed in both the Anthropology and East Asian Studies departments. In 1972 when I returned to Japan to commence my dissertation fieldwork, my initial plan was to study alternative forms of medical care in Japan, that is, all those practices not incorporated into the socialized, biomedical health care system including shamanism, acupuncture, and so on. Receiving no advice from my advisors, my unexamined assumption was that all these alternative forms would, no doubt, soon disappear and it was my task as an anthropologist to document their strengths and efficacy while they continued to exist (hopefully no aspiring anthropologist thinks in this way now!). One day, after procuring an introduction from the anthropologist Edward Norbeck, I visited Dr Ôtsuka, the leading kanpô-i in the greater Tokyo area (kanpô-i are specialists in herbal medicine who are also qualified physicians). In no time at all Dr Ôtsuka made it clear to me that I could not possibly accomplish my fieldwork as planned, and when I left him that day my research goals had undergone drastic modification. They now focused on the practice of institutionalized, East Asian medicine, with an emphasis on licensed clinics in Tokyo and Kyoto. Dr Ôtsuka made it abundantly clear that alternative medicine in Japan most certainly was not in decline. On the contrary it was undergoing what was known at the time as a kanpô boomu (a boom in East Asian medicine), driven in large part by public demand. My question then became: why was such a remarkable revival taking place, especially given that all Japanese citizens had ready access to socialized health care? The answers to this revised problem are set out in East Asian Medicine in Urban Japan: Varieties of Medical Experience. In the course of carrying out this research, I had stumbled across an orientation that would shortly become central to medical anthropology – one that acknowledges extensive medical pluralism as the norm, a position initially strongly advocated by Charles Leslie on the basis of his work in India. Medical pluralism has two interrelated facets: first, patients and their families very

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frequently make concurrent use of more than one type of medical system and, second, medical practitioners of all kinds regularly draw on knowledge and practices used by practitioners whose specialty is different from that of their own. As many readers will be aware, medical anthropology first took form in the 1960s as a distinct discipline and was consolidated as a  subdiscipline of anthropology from the early 1970s on. Medical anthropology began to be taught at Berkeley while I was in Japan, and prior to my return from fieldwork I had no idea that the research I was doing would be quickly absorbed under the umbrella of this new discipline. My immediate response on reentry into the Berkeley department was to resist this trend. The overriding reason for this was that medical anthropology was then being taught at Berkeley by George Foster, and his adamant position was that alternative medical systems alone should be subjected to anthropological analysis because biomedicine, being scientifically grounded, was by definition exempt. My experience in Japan – where I had been confronted by extensive pluralism, including a remarkable mingling at times of biomedicine with East Asian medicine – made it impossible for me to  accept this position, even though it was influential at the time. Furthermore, having worked as a research scientist for many years in clinical laboratories, I was well aware that values are indeed embedded in bioscientific thinking, and to dismiss this possibility out of hand was clearly mistaken. Certain medical sociologists were ahead of virtually all of the anthropologists of the day in recognizing medicine as a thoroughly social and political endeavour. But there were one or two medical anthropologists, inspired initially by early physician / anthropologists including Rudolph Virchow and W.H.R Rivers, who were quick to recognize that the social conditions of knowledge production should be a key focus of attention in creating an anthropology of medicine. Among them was my, now long-time, colleague, Allan Young, as well as Ronald Frankenberg and Michael Taussig. Having absorbed the lessons of these early theorists, I insisted when writing up my thesis that it would be entirely inappropriate to exempt biomedicine from a constructively critical analysis – a position that has informed my research orientation over the years. From 1976 to 1977 I held a postdoctoral position in medical anthropology at UCSF, and two evenings a week I taught at the Adult Extension Program of the university. The books written by Carlos Castaneda about the possibly fictitious healer Don Juan were best

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6 Margaret Lock and participants at the workshop “Beyond Reductionist Thinking,” Big Sur California, 1978. Margaret is standing, holding a glass. (Courtesy of M. Lock)

sellers at the time, and I was asked to teach a course at the Extension program on shamanism and altered states of consciousness. Students in the class ranged from a Jungian psychoanalyst to someone who proclaimed herself to be a witch, making it difficult to pitch the course appropriately! Even so, I believe that teaching this class, in addition to what I had learnt while doing ethnographic research in Japan, contributed greatly to my lifelong interest in how the relationship of mind and body is conceptualized by experts (medical and philosophical), the public at large, and individuals and families. The anthropologically-oriented literature on altered states of consciousness with which I felt most at ease stressed that shamanistic healing is by no means a matter of “turning on and tripping out” but, rather, when effective, is an important social and political occupation, successfully undertaken only after years of training. The visions one sees, if visions are central to the tradition, are socially constructed, and those individuals who are unable to see correctly

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7 Participants at a Wenner Gren conference in Cascais, Portugal, 1988. Bottom row (left to right): Allan Young, Nancy Scheper-Hughes, Shirley Lindenbaum, Margaret Lock, Gananath Obeyesekere, Ronnie Frankenberg. Middle row (L to R): L. Obbink, Roberto Briceno-Leon, Diana Long, Lorna Amarasingham Rhodes, Tola Olu Pearce, Donna Haraway, Nicole Sindzingre. Standing row (L to R): Patricia Kaufert, Jean Comaroff, Byron Good, Sue Estroff, Peter Wright, Sydel Silverman, George Armelagos, Horatio Fabrega, Nancy Watson, Roger Jeffrey, F. Pinto Lopez. (Courtesy of Wenner Gren Foundation)

never make the grade as shamans. The beginnings of my preoccupation with the ways in which bodies and minds are inevitably represented and subjectively experienced in terms of value-laden contexts – social, cultural, medical, and political – were established in these early days, and it was this approach that I brought to the writing of the essay “The Mindful Body: A Prolegomenon to Future Work in Medical Anthropology,” coauthored with Nancy Scheper-Hughes.

T h e M ov e to M c G ill Uni versi ty I have at times been doubly marginalized during my professional life. First, as an anthropologist of Japan, there was a danger of having one’s work marginalized because “real” anthropologists tough it out in poorer parts of the world, for the most part working in nonliterate societies and enduring considerable hardship while doing field work.

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Perhaps more pertinently, for over fifty years Japan was thought of as too Westernized to be a valuable anthropological research site – a position with which I take issue, because such an attitude assumes modernity emanated from the West alone. Furthermore, if one wishes to create measured critical commentary about Western societies and certain of their unexamined assumptions, many of which continue to be imperialistic in nature, countries that modernized very early, such as Japan, make a perfect foil, especially because it was never colonized. Second, medical anthropologists were until relatively recently frequently marginalized by many of their social science colleagues and were accused, in effect, of having sold out to the medical profession, as one of my colleagues in sociology informed me shortly after my arrival at McGill University. The assumption within more conservative factions was that we medical anthropologists simply facilitate patient compliance by assisting with what is now called the translation of knowledge across domains. Fortunately this attitude has diminished greatly, particularly as the social and political determinants of ill health, and above all the impact of poverty, are made ever more visible in the media and professional medical and social science journals. However, in contrast to epidemiologists and many sociologists, medical anthropologists usually choose not to limit their investigations to survey research, even though such projects usually make the social determinants of ill health undeniably visible. When quantitative research fails to incorporate local languages, knowledge, and concerns into questionnaires and interviews, in the opinion of most anthropologists, such findings are not sufficiently nuanced and may be at times dangerously misleading. Furthermore, it is evident that selection of samples frequently leaves a great deal to be desired. On the other hand, the ethnographic findings of medical anthropologists are often ignored, usually because they are not readily quantifiable, even though they may incite interest. There are few signs that this will change in the near future. In Canada, for example, the current funding situation for health-related research making use of qualitative methods is very bleak. I was fortunate to conduct my research when funding was on the whole generous and timely. My more than thirty years of association with the Department of Social Studies of Medicine at McGill University has been an exceptionally stimulating and productive time as part of a vibrant interdisciplinary department. I cannot think of anywhere else where I would rather have passed my professional life (except occasionally

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towards the end of a Montreal winter when warmer climes can be very attractive indeed). I have frequently said that teaching at McGill, of both undergraduates and graduates, provided me with constant stimulation, and the questions and problems posed by students are often those that force the most productive reflection and revisions of one’s thinking. The research projects that I have undertaken over the past three decades while at McGill have all been based to some extent on my earlier thinking about human bodies as situated, that is as embedded, in contexts: physical, social, and political, each of which has historical antecedents. The first of these projects was a comparative study on menopause in which I carried out the Japanese component. This research was already under way in both Canada and the United States when I joined. The project had been set up primarily to make use of survey methodology. Patricia Kaufert, at the University of Manitoba, was exceptionally supportive and generous with her knowledge, time, and research tools when she incorporated me into the team. It was agreed from the outset that the Japanese contribution would have both a quantitative and qualitative component, and not be limited to survey research. I was adamant, and Patricia agreed, that I could not create a questionnaire for use in Japan without first undertaking some fine-grained qualitative research that involved entering into the world of middle-aged Japanese women as well as Japanese gynecologists. But for the survey to be statistically comparative it had to ask, in effect, the same questions as those that had already been asked in North America and, ideally, I needed to sample at least 1,000 Japanese women. A great deal of careful preparation went into this study, carried out during my first sabbatical leave. The research was done in the days before computers, when keysort cards were used to tabulate questionnaire findings, and shipping those cards in boxes to Manitoba from Kyoto caused a great deal of anxiety, although all was well in the end. The Japanese findings proved to be a surprise to me, and I would never have been able to draw the conclusions I did without the use of a standardized questionnaire supplemented by extensive qualitative research: both approaches were indispensable to this project. I had assumed prior to undertaking the research that the attitudes and experiences of Japanese women as they entered and went through menopause would be culturally constructed – in other words, they

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would have a widely shared discourse about the menopausal experience that, no doubt, would differ from what was common in North America. This proved to be the case. But the survey research also made it clear that actual symptom reporting at menopause was significantly different in Japan than in North America, and I describe these findings in Encounters with Aging: Mythologies of Menopause in Japan and North America. When I began to write up the results I realized very quickly that these findings might be interpreted simply as rather odd deviations from the norm of the supposed universal menopausal experience built from research carried out largely by gynecologists in North America and Europe. It was clear that I could not successfully contextualize and hence attempt to account for the Japanese findings without devoting equal time to the ways in which the experience of menopause in North America is historically and socially constructed. Anything less than this would have left the Japanese experience as an exotic oddity, as indeed many North American and European gynecologists insisted must be the case. The findings from this research have stood the test of time. Furthermore, it is now clear that there is considerably more variation in the experience of menopause worldwide than had been anticipated. I was hesitant at first to push what I believed were the most significant findings of this research, namely that material bodies are not, everywhere, exactly the same and that it is not merely culturally infused values and beliefs that are locally variable. One of my abiding theoretical concerns, one fundamental to a great deal of anthropology, has been about the relationship between culture and biology, and I was feeling strongly at the time, and still do, that social constructionist arguments are themselves a form of reductionism. Generalizing from the findings about menopause in Japan, it seemed undeniable that certain aspects of body functioning are locally produced, so to speak, as a result, at times, of genetics and evolutionary change but also due to local environments and life styles, behavioural patterns, and diets. Moreover, subjective bodily experiences, intimately associated with these biological differences, are inseparably entangled with, and in turn have an influence on, medical discourse and practices in local settings. Such biological differences I termed “local biologies.” This concept is currently being given a great deal of attention, in part due to developments in molecular genetics and genomics and in the burgeoning field of epigenetics.

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Recent research published by an increasing number of medical anthropologists, several of who have contributions in this book, make use of and have expanded upon this concept. More recently, I undertook another comparative project, once again based primarily on research carried out in Japan and North America. The topic in this case was the invention of the concept of brain death in order to legally obtain organs for transplant. This project was conceived after reading extensive reports in the Japanese media, many of which were overtly critical of the relatively untroubled routinization of brain death as the end of human life in North America. The resultant book, Twice Dead: Organ Transplants and the Reinvention of Death, has a comparative historical component that was indispensable when attempting to explain why, in Japan, in contrast to the majority of countries in the Western hemisphere, it was not possible for several decades to legally recognize brain death as the end of life. This research was the first project in which I placed technology at the center of discussion and, as such, it represents a foray into the field of science and technologies studies. Without the development of the artificial ventilator, human existence with a beating heart and an irreversibly damaged brain could not have come about. But the technology does not determine whether such bodies will be counted as dead or alive – that falls to a complex set of medical, legal, religious, philosophical, and political negotiations about what determines the boundary between life and death. Drawing on comparative historical / ethnographic findings I was able to address a fundamental moral question about what constitutes human life and show how this is not everywhere assessed in the same way, whether by experts, people whose relatives are directly affected, or the public at large. Once again, I subjected to scrutiny the normative assumptions present in North America and much of Europe, and exposed the inconsistencies present in dominant medical accounts. My most recent book, titled The Alzheimer Conundrum: Entanglements of Dementia and Aging, will be published in 2013. This research is again comparative, but this time I have elected to work in the United Kingdom, Canada, and the United States. Like my previous research topics it is a project about boundary-making – in this instance tracing the way in which what is assumed to be age-related normal and abnormal cognitive functioning is conceptualized in the worlds of neurology and cognitive psychology. My account is about the so-called emerging pandemic of Alzheimer’s disease and, at a finer

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8 Margaret Lock with Allan Young in Ottawa, 2007, where she received the 2007 Gold Medal of the Social Sciences and Humanities Research Council for Outstanding Research. (Courtesy of M. Lock)

level of analysis, sets out to consider a conundrum, namely that the neuropathological signs of Alzheimer’s recognized for more than one hundred years do not always correspond with so-called cognitive decline demonstrated by means of neuropsychological testing. In other words, a good number of us older folks harbour senile plaques but show no signs of dementia – a finding demonstrated by the new technology of in-vivo imaging of plaques in the brain and by autopsy findings after death. This raises a philosophical enigma and demands anthropological investigation: under what conditions is “pathology” normal? And what are the implications of the dissemination of such ambiguous information among the public, based on technologies that are not as yet standardized, and about which there is a great deal of controversy among experts?

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Furthermore, there has been a recent so-called paradigm shift in thinking about Alzheimer’s. In part the result of a failure thus far to find a cure, this move entails efforts to detect prodromal, presymptomatic changes thought to be molecular markers of risk for AD later in life. The hope is to nip this frightening condition in the bud and so save society from the burgeoning economic drain looming on the horizon by an aging population. This move to prevention, if successful, will entail screening of large segments of the population while middle-aged or younger. My most recent work [Lock 2013] has focused on individuals’ responses to estimates they had been given about their future risk for AD as a result of participating in a randomized controlled trial. These estimates, in my opinion, are crude at best and dangerously misleading at worst. This research takes me back full circle to nineteenth century mind / body and culture / biology dichotomies that continue to inform so much of the dominant thinking about the body in health and illness. I believe that the time is long overdue to move towards a shared recognition of the inseparability of these entities. Together with historiography, the ethnographic approach can shed a great deal of light on the way in which such dichotomous thinking came about, is sustained, and with what effects. It can also show just how parochial are such dichotomies, products as they are of European Enlightenment thinking. I want to thank my past students for taking a great deal of time to put together this extremely valuable volume. The essays make abundantly clear that medical anthropology has a great deal to offer in making efforts to improve the health and everyday lives of people wherever they live. In my opinion, it is crucial that research of this kind continue to flourish – without it, global health enterprises and health promotion campaigns are unlikely to succeed more than minimally. But in the end perhaps it is the tendency of anthropologists to play a subversive role: to question the hardened concepts and unexamined assumptions present in our own society, and to trouble apparent natural categories, that may be our most important contribution to the advancement of human well-being.

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Selected Awards and Publications by Margaret Lock

Se l e c t e d Award s 2011

Association of American Publishers 2010 PR OSE award in the Archeology and Anthropology Category for An Anthropology of Biomedicine, coauthored with Vinh-Kim Nguyen, Oxford: Wiley-Blackwell Press, 2010 2010 Appointed Officer of the Order of Canada 2008 Career Achievement Award, Society of Medical Anthropology, American Anthropological Association 2007 S S HRC Gold Medal for Achievement in Research 2005 Inducted into l’académie des Grands Montréalais, secteur social 2005 Canada Council of the Arts, Killam Prize for the Social Sciences 2005–08 Trudeau Foundation Fellow 2004 Officier de L’Ordre national du Québec 2003 The American Anthropological Association, Robert B. Textor and Family Award for Excellence in Anticipatory Anthropology 2002 Sociology of Health and Illness Book of the Year Award, The British Sociological Association for Twice Dead: Organ Transplants and the Reinvention of Death, Berkeley: University of California Press, 2002 2002 Canada Council for the Arts, Molson Prize 2002 Council on Anthropology and Reproduction (car), Society of Medical Anthropology Award for best edited book, for Pragmatic Women and Body Politics, edited with Patricia Kaufert. Cambridge: Cambridge University Press, 1998 1997 Wellcome Medal for research in medical anthropology, Royal Anthropological Institute of Great Britain

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1997

Léon-Gérin, Prix du Québec dans le domaine des sciences humaines 1997 The J.I. Staley Award, School of American Research for Encounters With Aging: Mythologies of Menopause in Japan and North America, Berkeley: University of California Press, 1993 1995 The Berkeley Award for Encounters With Aging: Mythologies of Menopause in Japan and North America, Berkeley: University of California Press, 1993 1994 Canada Japan Book Award, Canada Council for Encounters With Aging 1994 Elected, Fellow, Royal Society of Canada, Academy of Humanities and Social Sciences 1993 Eileen Basker Memorial Prize, American Anthropological Association for Encounters With Aging 1992–94 Canada Council, Isaak Walton Killam Research Fellowship 1988–90 Sigma Xi National Lecturer

Books 2013. The Alzheimer Conundrum: Entanglements of Dementia and Aging. Princeton: Princeton University Press. 2010. An Anthropology of Biomedicine, with Vinh-Kim Nguyen. Oxford: Wiley-Blackwell. 2009. Handbook of Genetics and Society: Mapping the New Genomic Era, edited with Paul Atkinson and Peter Glasner. New York: Routledge. 2007. Beyond the Body Proper: Reading the Anthropology of Material Life, edited with Judith Farquhar. Durham: Duke University Press. 2003. Remaking Life and Death: Towards an Anthropology of the Biosciences, edited with Sarah Franklin. Santa Fe: School of American Research. 2002. New Horizons in Medical Anthropology: A Festschrift in Honor of Charles Leslie, edited with Mark Nichter. New York: Routledge. 2002. Twice Dead: Organ Transplants and the Reinvention of Death. Berkeley: University of California Press. 2001. Remaking a World: Violence, Social Suffering, and Recovery, edited with Veena Das, Arthur Kleinman, Mamphela Ramphele, and Pamela Reynolds. Berkeley: University of California Press.

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2000. Living and Working with the New Medical Technologies: Intersections of Inquiry, edited with Allan Young and Alberto Cambrosio. Cambridge: Cambridge University Press. 1998. Pragmatic Women and Body Politics, edited with Patricia Kaufert. Cambridge: Cambridge University Press. 1997. Social Suffering, edited with Arthur Kleinman and Veena Das. Berkeley: University of California Press. 1993. Encounters with Aging: Mythologies of Menopause in Japan and North America. Berkeley: University of California Press. 1993. Knowledge, Power and Practice: The Anthropology of Medicine and Everyday Life, edited with Shirley Lindenbaum. Berkeley: University of California Press. 1988. Biomedicine Examined, edited with Deborah R. Gordon. Dordrecht: Kluwer Academic Publishers. 1987. Health and Medical Care in Japan: Cultural and Social Dimensions, edited with Edward Norbeck. Honolulu: University of Hawaii Press. 1980. East Asian Medicine in Urban Japan: Varieties of Medical Experience. Berkeley: University of California Press.

S e l e c t e d A rt ic l e s a n d Chapters i n Books 2011. “Embodying Molecular Genomics.” In A Companion to the Anthropology of the Body and Embodiment, edited by Frances E. Mascia-Lees, 223–38. Oxford: Wiley Blackwell. 2011. “Seduced by Plaques and Tangles: Alzheimer’s Disease and the Cerebral Subject.” In Neurocultures: Glimpses into and Expanding Universe, edited by F. Ortega and F. Vidal, 201–16. Frankfurt am Main: Peter Lang. 2010. “Dementia Entanglements in a Postgenomic Era Science.” Technology Human Values 35: 478–92. 2010. “Postgenomics, Uncertain Futures, and the Familiarization of Susceptibility Genes,” with Gillian Chilibeck and Megha Sedev. Social Science and Medicine 172: 1768–75. 2009. “Testing for Susceptibility Genes: A Cautionary Tale.” In Disclosure Dilemmas: Ethics of Genetic Prognosis after the ‘Right to Know / Not to Know’ Debate, edited by Christoph Rehmann-Sutter and HansJakob Müller, 65–84. Milton Park, Oxon: Ashgate.

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2009. “Demoting the Genetic Body.” Anthropologica 51: 159–72. 2008. “Biosociality and Susceptibility Genes: A Cautionary Tale.” In Biosocialities, Genetics and the Social Sciences, edited by Sarah Gibbon and Carlos Novas, 56–78. London: Routledge. 2008. “Situating the Practice of Organ Donation in Familial, Cultural, and Political Context.” Transplant Reviews 22: 154–7. 2007. “The Final Disruption? Biopolitics of Post-Reproductive Life.” In Reprodcutive Disruptions: Gender, Technology, and Biopolitics in the New Millennium, edited by Marca Inhorn, 200–24. New York: Berghahn Books. 2007. “Biomedical Technologies and Everyday Life: Cultural Horizons and Contested Boundaries.” In Encyclopedia of Science Studies, 2nd Edition, edited by Edward J. Hackett, Olga Amsterdamska, Michael Lynch, and Judy Wajcman, 875–900. Cambridge, MA: MIT Press. 2007. “Susceptibility Genes and Embodied Identity,” with Julia Freeman, Gillian Chilibeck, Miriam Padowsky, and Briony Beveridge. Medical Anthropology Quarterly 21(3): 256–76. 2007. “The Future is Now: Locating Biomarkers for Dementia.” In Biomedicine as Culture: Instrumental Practices, Technoscientific Knowledge, and New Modes of Life, edited by Regula Valérie Burri and Joseph Dumit, 61–85. New York: Routledge. 2007. “Genomics, Laissez Faire Eugenics, and Disability.” In Disability in Local and Global Worlds, edited by B. Ingstaad and S. Reynolds-White, 189–211. Berkeley: University of California Press. 2007. “On Dying Twice: Culture, Technology, and the Determination of Death.” In Readings in Comparative Health Law and Bioethics, edited by T. S. Jost, 93–8. Carolina Academic Press. 2006. “When it Runs in the Family: Putting Susceptibility Genes in Perspective,” with Julia Freeman, Rosemary Sharples, and Stephanie Lloyd. Public Understanding of Science 15: 277–300. 2006. “Genetic Susceptibility and Alzheimer’s Disease: The Penetrance and Uptake of Genetic Knowledge,” with Janalyn Prest and Stephanie Lloyd. In Thinking about Dementia: Culture, Loss, and the Anthropology of Senility, edited by A. Leibing and L. Cohen, 123–56. New Jersey: Rutgers University Press. 2006. “Global and Local Perspectives on Population Health,” with VinhKim Nguyen and Christina Zarowsky. In Healthier Societies: From Analysis to Action, edited by J.Heyman et al., 58–82. Oxford: Oxford University Press.

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2005. “The Eclipse of the Gene and the Return of Divination.” In Current Anthropology 46: S47–S70. 2004. “Displacing Suffering: The Reconstruction of Death in North America and Japan.” In Death, Mourning and Burial: A Cross-Cultural Reader, edited by A. Robben, 189–204. London: Blackwell Publishing. 2004. “Biomedical Technologies, Anthropological Approaches.” In Encyclopedia of Medical Anthropology: Health and Illness in the World’s Cultures, 86–95. Dordrecht: Kluwer Academic / Plenum Publishers. 2004. “Medicalization and the Naturalization of Social Control.” In Encyclopedia of Medical Anthropology: Health and Illness in the World’s Cultures, 116–25. Dordrecht: Kluwer Academic / Plenum Publishers. 2003. “Globalization and the Cultures of Biomedicine: Japan and North America.” In Medicine Across Cultures, edited by Helaine Selin, 155–73. Dordrecht: Kluwer Academic Publishers. 2003. “On Making up the Good-as-Dead in a Utilitarian World.” In Rethinking Life and Death: Toward an Anthropology of the Biosciences, edited by Sarah Franklin and Margaret Lock, 165–92. Santa Fe: School of American Research. 2002. “Inventing a New Death and Making it Believable.” Anthropology and Medicine 9: 97–115. 2002. “Symptom Reporting at Menopause: A Review of Cross-Cultural Findings.” Journal of the British Menopause Society 8: 132–6. 2002. “The Alienation of Body Tissue and the Biopolitics of Immortalized Cell Lines.” In Commodifying Bodies, edited by N. Scheper-Hughes and L. Wacquant, 63–92. London: Sage Publications. 2002. “Utopias of Health, Eugenics, and Germline Engineering.” In New Horizons in Medical Anthropology: Essays in Honour of Charles Leslie, edited by Mark Nichter and Margaret Lock, 239–66. London: Routledge. 2002. “Medical Knowledge and Body Politics.” In Exotic No More: Anthropology on the Front Lines, edited by Jeremy MacClancy, 190– 208. Chicago: Chicago University Press. 2001. “Medicalization: Cultural Concerns.” In International Encyclopedia of the Social and Behavioral Sciences, edited by N.J. Smelser and P.B. Baltes, 9534–9. Dordrecht: Kluwer Academic Publishers. 2001. “Alienation of Body Tissue and the Biopolitics of Immortalized Cell Lines.” Body and Society 7(2–3): 63–91. 2001. “The Tempering of Medical Anthropology: Troubling Natural Categories.” Medical Anthropology Quarterly 15: 478–92.

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2001. “Menopause, Local Biologies and Cultures of Aging,” with Patricia Kaufert. American Journal of Human Biology 13(4): 494–504. 2001. “Situated Ethics, Culture, and the Brain Death ‘Problem’ in Japan.” In Bioethics in Social Context, edited by Barry Hoffmaster, 39–68. Philadelphia: Temple University Press. 2000. “On Dying Twice: Culture, Technology, and the Determination of Death.” In Living and Working with the New Medical Technologies: Intersections of Inquiry, edited by Margaret Lock, Allan Young, and Alberto Cambrosio, 233–62. Cambridge: Cambridge University Press. 2000. “The Quest for Human Organs and the Violence of Zeal.” In Remaking a World: Violence, Social Suffering, and Recovery, edited by Veena Das, Arthur Kleinman, Mamphela Ramphele and Pamela Reynolds, 271–95. Berkeley: University of California Press. 1999. “The Cultural Politics of Female Aging in Japan and North America.” In Gender and Japanese History: Religions and Customs / The Body and Sexuality, edited by Wakita Haruko, Anne Bouchy, and Ueno Chizuko, 371–95. Osaka: Osaka University Press. 1999. “The Problem of Brain Death: Japanese Disputes about Bodies and Modernity.” In The Defining of Death: Contemporary Controversies, edited by Stuart J. Youngner, Robert M. Arnold, and Renee Schapiro, 239–56. Baltimore: The Johns Hopkins University Press. 1998. “Breast Cancer: Reading the Omens.” Anthropology Today 14(4): 7–16. 1998. “Anomalous Ageing: Managing the Postmenopausal Body.” Body and Society 4(1): 35–61. 1998. “Perfecting Society: Reproductive Technologies, Genetic Testing, and the Planned Family in Japan.” In Pragmatic Women and Body Politics, edited by Margaret Lock and Patricia Kaufert, 206–39. Cambridge: Cambridge University Press. 1998. “The Case for Allowing Kidney Sales,” with J. Radcliffe-Richards, A.S. Daar, R.D. Guttmann, R. Hoffenberg, I. Kennedy, R.A. Sells, and N. Tilney. The Lancet 351: 1950–2. 1998. “The Case for ‘Presumed Consent’ in Organ Donation,” with I. Kennedy, R.A. Sells, A.S. Daar, R.D. Guttmann, J. Radcliffe-Richards, and N. Tilney. The Lancet 351: 1650–2. 1997. “Should Organs from Patients in Permanent Vegetative State be Used for Transplantation?,” with R. Hoffenberg, N. Tilney, A.S. Daar, R.D. Guttmann, I. Kennedy, J. Radcliffe-Richards, and R.A. Sells. The Lancet 350: 1320–1.

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1997. “Deadly Disputes: Hybrid Selves and the Calculation of Death in Japan and North America.” Culture 17(1–2): 27–42. 1997. “The Human Genome Diversity Project: A Perspective from Cultural Anthropology.” In Human DNA: Law and Policy: International and Comparative Perspectives, edited by Bartha Maria Knoppers, Claude M. Laberge, and Marie Hirtle, 229–37. The Hague: Kluwer Law International. 1997. “Displacing Suffering: The Reconstruction of Death in North America and Japan.” In Social Suffering, edited by Arthur Kleinman, Veena Das, and Margaret Lock, 207–44. Berkeley: University of California Press. 1997. “The Unnatural as Ideology: Contesting Brain Death in Japan.” In Japanese Images of Nature: Cultural Perspectives, edited by Pamela Asquith and Arne Kalland, 121–44. Cambridge: Cambridge University Press. 1996. “Death in Technological Time: Locating the End of Meaningful Life.” Medical Anthropology Quarterly 10: 575–600. 1996. “Deadly Disputes: Ideologies and Brain Death in Japan.” In Organ Transplantation: Meanings and Realities, edited by Stuart Youngner, Renée Fox and Laurence O’Connell, 142–67. Madison: University of Wisconsin Press. 1996. “Displacing Suffering: The Reconstruction of Death in North America and Japan.” Deadalus 125: 207–44. 1995. “Transcending Mortality: Organ Transplants and the Practice of Contradictions.” Medical Anthropology Quarterly 9: 390–5. 1995. “Contesting the Natural in Japan: Moral Dilemmas and Technologies of Dying.” Culture, Medicine and Psychiatry 19: 1–38. 1994. “Interrogating the Human Genome Diversity Project.” Social Science & Medicine 39(5): 603–6. 1994. “Contests with Death: Ideologies of Nationalism and Internationalism in Japan.” In Life and Death Under High Technology Medicine, edited by Ian Robinson, 169–88. Manchester University Press. 1994. “Social and Historical Aspects of Maternal and Child-Health in Japan, with Naoko Miyaji.” Deadalus 123(4): 87–112. 1993. “The Politics of Mid-Life and Menopause: Ideologies of the Second Sex in North America and Japan.” In Knowledge, Power & Practice: The Anthropology of Medicine and Everyday Life, edited by Shirley Lindenbaum and Margaret Lock, 330–63. Berkeley: University of California Press. 1993. “Cultivating the Body: Anthropology and Epistemologies of Bodily Practice and Knowledge.” Annual Review of Anthropology 22: 133–55.

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1993. “Ideology, Female Midlife, and the Greying of Japan.” Journal of Japanese Studies 19(1): 43–78. 1991. “Nerves and Nostalgia: Greek-Canadian Immigrants and Medical Care in Quebec.” Curare 7: 87–103. 1991. “Contested Meanings of the Menopause.” The Lancet 337: 1270–91. 1990. “Rationalization of Japanese Herbal Medication: The Hegemony of Pluralism.” Human Organization 49: 41–7. 1990. “A Critical-Interpretive Approach in Medical Anthropology: Rituals and Routines of Discipline and Dissent,” with Nancy Scheper-Hughes. In Medical Anthropology: A Handbook of Theory and Method, edited by Tom Johnson and Caroline Sargent, 47–72. New York: Greenwood Press. 1990. “On Being Ethnic: The Politics of Identity Breaking and Making in Canada, or Nevra on Sunday.” Culture, Medicine and Psychiatry 14: 237–52. 1990. “Reaching Consensus about Death: Heart Transplants and Cultural Identity in Japan,” with Christina Honde. In Social Sciences Perspectives on Medical Ethics, edited by George Weisz, 99–119. Dordrecht: Kluwer Academic Publishers. 1989. “Words of Fear, Words of Power: Nerves and the Awakening of Political Consciousness.” Medical Anthropology 11: 79–90. 1988. “Japanese Mythologies: Faltering Discipline and the Ailing Housewife in Japan.” American Ethnologist 15: 43–61. 1988. “A Nation at Risk: Interpretations of School Refusal in Japan.” In Biomedicine Examined, edited by Margaret Lock and Deborah R. Gordon, 377–414. Dordrecht: Kluwer Academic Publishers. 1987. “Protests of a Good Wife and Wise Mother: The Medicalization of Distress in Japan.” In Health and Medical Care in Japan: Cultural and Social Dimensions, edited by Edward Norbeck and Margaret Lock, 130–57. Honolulu: University of Hawaii Press. 1987. “The Cultural Construction of Menopause in Japan.” In Regards Anthropologiques en Psychiatrie, edited by Ellen Corin, S. Lamarre, P. Migneault, and M. Tousignant, 25–43. Montreal: Girame. 1987. “The Mindful Body: A Prolegomenon to Future Work in Medical Anthropology,” with N. Scheper-Hughes. Medical Anthropology Quarterly n.s. 1: 6–41. 1987. “D S M I I I as a Culture-Bound Classificatory System: A Response to Raymond Prince’s DS M I I I and the Culture-Bound Syndromes.” Culture, Medicine and Psychiatry 11: 35–42.

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1986. “Speaking ‘Truth’ to Illness: Metaphors, Reification and a Pedagogy for Patients.” Medical Anthropology Quarterly 17: 137–40. 1986. “My Nerves are Broken: The Communication of Suffering in a Greek-Canadian Community.” In Health and Canadian Society, edited by D. Coburn et al., 295–313. Toronto: Fitzhenry & Whiteside Ltd. 1986. “Ambiguities of Aging: Japanese Experience and Perceptions of Menopause.” Culture, Medicine and Psychiatry 10: 23–46. 1986. “Plea for Acceptance: School Refusal Syndrome in Japan.” Social Science & Medicine 23: 99–112. 1985. “The Impact of the Chinese Model on Japan, or How the Younger Brother Comes of Age.” Social Science & Medicine 21: 945–50. 1984. “Licorice in Leviathan: Traditional Japanese Medication, Biomedicine, and the Pharmaceutical Industry.” Culture, Medicine and Psychiatry 8: 121–39. 1982. “Models and Practice in Medicine: Menopause as Syndrome or Life Transition.” Culture, Medicine and Psychiatry 6: 261–80. 1982. “Traditional and Popular Attitudes Toward Mental Health and Illness in Japan.” In Cultural Conception of Mental Health and Therapy, edited by G. White and A. Marsella, 215–33. Boston: D. Reidel & Co. 1980. “The Organization and Practice of East Asian Medicine in Japan: Continuity and Change.” Social Science & Medicine 14B: 245–53. 1980. “An Examination of the Influence of Traditional Therapeutic Systems on the Practice of Cosmopolitan Medicine in Contemporary Japan.” American Journal of Chinese Medicine 8: 221–9. 1978. “Scars of Experience: The Art of Moxibustion in Japanese Medicine and Society.” Culture, Medicine and Psychiatry 2: 151–75.

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Contributors

N aomi A d e l son, associate professor, Department of Anthropology, York University, Toronto, Canada. [email protected] Domini que B é hague , associate professor, Medicine, Health, and Society, and Anthropology, Vanderbilt University, Nashville, U SA , and senior lecturer, Department of Social Science, Medicine, and Health, King’s College, London, England. dominique.behague@ vanderbilt.edu P. Sea n B ro t he rto n, assistant professor, Department of Anthropology, Yale University, New Haven, U S A. pierre.brotherton@yale. edu Leslie B ut t, associate professor, Department of Pacific and Asian Studies, University of Victoria, Victoria, Canada. [email protected] K a r in a K i e l ma nn, senior lecturer, Institute for International Health & Development, Queen Margaret University, Edinburgh, Scotland. [email protected] Ju n ko K i ta na k a , associate professor, Department of Human Sciences, Faculty of Letters, Keio University, Tokyo, Japan. [email protected] A n n ett e L e i b i ng, professor, Faculty of Nursing, Université de Montréal, Montreal, Canada. [email protected]

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Contributors

Stepha n i e L l oy d, assistant professor, Department of Psychiatry, McGill University, Montreal, Canada. [email protected]. ca Ma r g a re t L o c k, Marjorie Bronfman Professor in Social Studies in Medicine, Emerita, Department of Social Studies of Medicine, McGill University, Montreal, Canada. [email protected] V in h-K im Nguy e n, associate professor, Department of Social and Preventive Medicine, Université de Montréal, and H I V physician, Clinique médicale l’actuel and Centre hospitalier de l’Université de Montréal, Montreal, Canada. [email protected]

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Index

A B C model, 58 Agamben, Giorgio, 73–4 Alzheimer’s disease, 8, 168; paradigm shift of, 220–1 American Association for World Health (AAW H), 30n7 anxiety, 102–3, 105–6, 108–10; disorders, 104; nonpsychological explanations of, 103, 109–10; stigma of anxiety and other psychological symptoms, 104, 106, 111–12 behaviour disorders (attentiondeficit hyperactivity disorder, conduct disorder, “acting out”), 123, 129, 134–6, 139; and class, 125; diagnosis in adolescence, 123; and gender, 127 Berkeley, anthropology department of, 211, 213 biologization, 110, 116; legitimacy of biological explanations, 103, 105, 109–10, 116; preference for biological explanations 104–5, 109

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biomedicine, 5, 16, 18, 37–9, 42–3, 48–9, 54–5; critique of, 5, 8; informal biomedical economy, 45–7; and Lock’s concept of medical systems, 4–5; and medical knowledge, 4–5, 9–11; study of, 213 biopolitics of health, 18–9, 28–9; macroeconomic change, 19; micropolitics of health, 27 biopower, 124, 126, 140; psychiatric defiance of, 126 biosociality: and communities of resistance, 169, 171–2; in virtual communities, 12 body, 17, 29; and “biologized subjectivities,” 7; and biopolitics, 18, 28; exclusions of persons via, 74; and genealogy of individual bodily practices, 17–8, 24–9; Lock’s concept of, 5–8; management of persons via, 67–73; mindful, 6; and national identity, 17–20; subjective experience, 218; theories about, 60–1 Brazil, 10, 11, 123–5, 141

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Index

Castro, Fidel, 28 C B T . See cognitive and behavioural therapy class, 125, 129–32, 136–9; and conflict, 127, 131; and discrimination, 136; and gender, 132, 135–9; in medical case histories, 157–59; and politicization, 127, 131; and psi therapy, 140 clinics: community context of consultorios, 20, 122; and HI V care, 34; in India, 149; and primary health care, 39; private, 41; psychiatric, 92, 95; San Lázaro clinic, 20–6 cognitive and behavioural therapy, 106, 108, 113; and ability to improve functionality, 112–13; and therapists, 106–7; and modernization and globalization, 106; promotion of, 106; versus psychoanalysis, 106–8, 112–13 condoms, 10, 58–9, 65–6, 71, 75 counterbiopolitics. See resistance Côte d’Ivoire, 9, 34–7, 40, 46, 50, 54; colonial medicine in, 37; medical culture in, 37–8, 54; privatization of health care, 45; public health care in, 39–40 critical consciousness, 128; and politicization, 128–30, 135, 141. See also politicization Cuba, 9, 16–20, 26, 28–9; and body politics, 17–8; in crisis, 17–20, dual economy, 31n12; economic crisis in, 19, 21; and “economy of favors,” 22; and health care, 24–5; informal economy (lo informal) and corruption, 20; insurance, 14, 31n11;

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and la lucha, 23, 28; periodo especial, 18, 21; as pragmatic state, 26; primary health care, 20–21; la Revolución, 23, 25, 30n9; Soviet withdrawal from, 19, 28; withdrawal from political economy of health care, 26–8 Cuban family physician and nurse program, 20; criticism of, 20–6; founding of, 21 Cuban currency, 17; and currency market, 31n12; and dollar stores, 23; foreign, 20, 27, 30n8; pesos convertibles, 27, 31n12 cyberbody, 173, 179–81; comprendre ensemble and, 179; and Internet, 12, 169; pharmacological matters and, 176 death, 5; and brain death, 8, 34, 219 DelVecchio Good, Mary Jo: politics of hope, 18 depression, 11; and dependency, 85; differential suffering, 81; and gender anomaly, 81; and interplay between medicine and subjectivity, 81; meanings of, 86–8; and melancholy, 81–3, 85, 89; in men, 83–6; overwork and, 81–3, 90–2, 96–7; and popular representation, 80; and reflexivity, 97; salaryman, 81; in women, 80–1, 90–8 Diagnostic and Statistical Manual (DSM), 123–24 diagnostic testing, 152; for HIV , 146, 148, 152, 154; and naturalization of diagnostic labels, 104; without consent, 146, 148, 151– 2, 154–5

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Index

drugs, pharmaceuticals and/or medical supplies, 39, 43, 45–8; and antiretroviral therapy management, 147–150; consumption of, 43–4; counterfeit, 46; economic disparity and, 20, 147; informal trading in, 20, 22; at international clinic pharmacies, 22, 30n8; marketing of, 104–5; and minerals, 107, 114; and Parkinson’s disease, 169, 172, 176–7, and people’s knowledge, 22; and selective serotonin reuptake inhibitors, 107; shortage of, 22; and STDs, 50–4; symbolic value of, 49 Durkheim, Emile, 175–6 e-health, 12–13, 190–2; and AFN , 194, 202; definition, 192–3, 202n2; and federal government, 193, 203n5; and First Nations’ health information management, 194–95; as means of First Nations’ empowerment, 193, 195–6, 202; technologies, bodies and, 191; and self-determination, 193, 202. See also Information and Communication Technologies embodied molecules, 12, 168, 173, 175, 177, 182 evidence: through expertise, 153; use of in predicting HI V/AI DS epidemic, 149 Facebook, 196, 198–200; and “Creenglish,” 199; as communications alternative, 197, 200; as place of engagement, 200–1; and relatedness, 200–1

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Fassin, Didier, 140; political space of health, 36 First Nations, 12, 190–95, 202 Foucault, Michel, 17, 28–9, 124–6 France, 10, 38, 102–3, 105–8, 111 Frankenberg, Ronald, 213 French medicine, 102–3, 105–7, 109, 114 gender, 125–27, 133–37; and depression, 11, 80; and feminism, 133; and health seeking behaviour, 158; and IC Ts, 196; in medical case histories, 157–9 Hacking, Ian, 175; biolooping, 175 health examinations, 45, 63–6; doctors at, 64–6; military presence at, 63–4 health social networks, 11, 201; and sociolismo, 27 Hepatitis C, 53–4 H I V : antiretroviral therapy, 146, 148–9, 156, 162; in Côte d’Ivoire, 9; counseling, 148, 155; incidence in Indonesia, 62, 76n4; as a local biology, 35; management, 148; pharmaceutical consumption, 50–2; presentation of symptoms by H I V patients, 150–1, 157; policy in India, 146, 148; prevention, 10, 61, 63–6, 70–1; prevention as a strategy for exclusion, 74; management in private medical sector (India), 148; and risk, 50–1; in urban India, 12; in West Africa, 35 human rights violations: Indonesia, 68–9

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Information and Communication Technologies (ICTs), 189–90; use in Cree H1N1 vaccination campaign, 194–95; and cyberactivism, 190; and cyberbodies, 179–81; and digital divide, 193; and First Nations community connectivity, 196; and health, 190, 192, 202; structural limits of, 195; as “technologies in practice,” 192, 196, 202; and telemedicine, 203n4; transformative potential of, 190, 195–96; women’s valuation of, 196, 201. See also e-health India, 12; health care in, 145–46; H I V management in, 147–49 Indonesia, 10, 58–60, 62, 68–9, 72, economic conditions in, 62, 68–9, 74; HI V prevention initiatives in, 59, 70–1; margins of, 73–4; military role within, 68–9; political conditions, 69; regulation of persons within, 67, 74; sexual mores in, 59, 66 Japan, 5–6, 8, 10–11, 16, 34–5, 54, 80–4, 98, 216–17 Kaufert, Patricia, 217 local biologies, 34–5, 55, 170, 173– 5, 182, 183n7, 218; cyberbodies and, 12; HI V and, 10, 12; Lock’s concept of, 4, 6–7; and medical knowledge, 7 Lock, Margaret, 6, 16, 29, 54, 59–60, 80–1, 103, 110, 116–17, 126, 140, 170, 173–4, 182, 191– 2, 196; on aging, 5–6; on biotechnologies, 7–9, 12–13, 191–2;

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early childhood and education, 209–11; early employment, 211; East Asian Medicine in Urban Japan, 35, 212; Encounters with Aging, 34, 218; graduate education, 212; ideas about the body, 16–17, 29; and local biology, 141; and medicalization, 126; on menopause, 81, 98, 173; Pragmatic Women and Body Politics, 27; and resistance, 27; and subjectivity, 126; and “technologies in practice,” 191–2, 196; undergraduate education, 211; and WHO survey on depression, 80 Lock, Richard, 212 longitudinal methodology, 127, 142n5; and epidemiology, 125, 127 Mauss, Marcel, 5–6 McGill University, 216–17 medical anthropology, 3–4, 13, 16, 35, 126, 182, 212–13, 216, 221 medical case histories, 150–4; and case-based reasoning, 153–4; and diagnostic processes, 152; and symptomology, 151 medical pluralism, 35–6, 42, 212– 13; in India, 145–46, 149–50, 161; in Japan, 212; mixed practice in Indian private sector, 146, 150; and therapy managing groups, 36; transition in India, 160 medical uncertainty, 147–48, 152, 154–56, 159, 161–62 medicalization, 5, 60–1, 96, 103–4, 111, 113, 115–16, 123–24, 126,

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Index

139; categories of persons via, 66–7, 70–1, 73–4; legitimation of violence and, 74; Lock’s concept of, 4–5, 10–1; and medicalized subjectivities, 17–18; naturalization and, 60–1; and people’s knowledge of bodies and health, 17; risk and, 6; in relation to psi practice, 139; and remedicalization, 104, 116–17 medication effects, 168–9, 171–2, 176–81; as communal, 168–9; and the experiencing body, 175; gambling as, 181; homosexuality as, 181; local biologies and, 173, 182; placebos and, 182; and social learning, 170 menopause, comparative study of, 34, 81, 98, 173, 217–18 minerals: in explanations and treatments of spasmophilia, 102–3, 105, 107, 113; healing properties attributed to in French medicine, 105–6 moral agency: of patients, 157–9; of practitioners, 160–2 moral economy, 36, 55n1; of care, 12; of knowledge, 148, 156 narrative employment: of medical case histories, 157; and professional authority, 162; and scripts, 160 nevra, 103, 110, 112, 116–17; and nerves, 105 Ōtsuka, Yasuo, 212 Papua (Indonesia), 59, 76n1; economic conditions of, 62, 68–9;

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239

as Military Operations Zone, 68; political conditions of, 69 Parkinson’s disease (PD ), 12, 171– 72, 176, 180; alternative and complementary medicine and, 171; bioidentity and, 169; and the changing body, 177; cyberbodies and, 179; deep brain stimulation and, 169, 171; definition of, 169, 183n3; and Internet mailing lists, 168, 170; as “life disorder,” 169; Michael J. Fox and, 169; treatment and the tempering of hope, 175, 179; and virtual communities, 168–76 patterns of resort, 34–6, 43, 47–50, 54, 154 politicization, 140–1; and class, 127–31; social psychiatry and, 125; and young women, 132–8 pragmatism, 9; and decision-making, 113, 117; among medical practitioners, 147–8, 161; and regaining functionality, 112–13 pragmatic state, 28; and health care, 22, 25–6; subjectivities and, 28 professional identity of medical providers: in India, 149, 153, 162 prostitution. See sex work psychiatric: orderings, 92; persuasion, 84; and psyche versus soma, 92 psychiatry, psi-expertise, 123–5; and deinstitutionalization, 124– 5; and psychodynamic/psychoanalytic, 123–7, 132, 142 psychoanalysis, 11; as opposed to social phobia, 108, 112–13. See also social phobia

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Index

public health care, 39–40, 49; colonial, 37; cultural appropriateness of, 50; and the informal economy, 51; insurance, 43; medical pluralism and, 145; privatization of, 41–2 race: and H I V prevention, 63–4; and military violence, 59, 68–9 recovery: and Buddhism, 89; and control, 88; and depression, 83; and gender, 94; and inner tranquility, 89; and productivity, 96 resistance, 75; critiques of social, political, and economic conditions, 103–4, 115–16. See also biopolitics of health; communities of resistance Rivers, W.H.R., 213 selective serotonin reuptake inhibitors (S S RI), 95, 106, 107, 112– 14, 117 sex work (Indonesia), 62, 63, 71; categorization of, 74; rehabilitation efforts, 65–6; multigenerational, 72; strategies for resistance within, 70, 75; and violence, 62–3, 71–3 sexually transmitted infections (S T Is), 10, 50–3, 55, 64, 66–7, 156 social phobia: association with globalized psychiatric knowledge and practices, 106; and avoidance of personal and social factors of anxiety, 109–10, 114–15, 117; causes of, 103, 106, 110–11; and comorbidity, 108–9; compared to spasmophilia, 108, 117;

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definition of, 103; legitimacy of label, 106, 113–14; and pharmaceutical industry, 107; promotion of label, 109, 115–16; support group for, 106–8, 110, 112, 115; opposed to psychoanalysis, 108, 112; treatment of, 106, 111–12, 117 spasmophilia: cause of, 102; compared to social phobia, 11, 108, 117; as a culture-bound syndrome, 102; definition of, 102; disappearance or nonexistence of, 102–3; legitimacy of label, 106, 113–14; preference for label of, 105, 109; rate and popularity of, 102, 105; treatment for, 102–3, 105, 117 s s ri s . See selective serotonin reuptake inhibitors state power, 27–8, 31n9; as “state of exception,” 18, 30n2 S TI s. See sexually transmitted infections suicide, 80, 87, 89–90; overwork and, 82. See also depression therapeutic: economies, 36, 42; itineraries, 36, 47–50; modernism, 10 Traditional Chinese Medicine, 42–3 troubling natural categories, 3–4, 16, 140, 147, 221 tuberculosis, 50, 146, 150, 155 US embargo (el bloqueo), 17, 19 violence, 10; everyday forms of, 69–70, 72; HIV education and, 61, 63–6; in Indonesia, 62; medical systems and, 61, 68–9;

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Index

military and, 68–9; sedimentation of, 62–3, 70, 74; sex work and, 63, 72–3, 74 vulnerability: biological discourse and, 98; and Japanese medicine, 98; patients’ sense of, 85; and women, 98 Virchow, Rudolph, 213 virtual technologies, 12. See also Information and Communication Technologies (ICTs)

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241

Whapmagoostui, Cree village of, 197; Internet access in, 197; and women, 197–8 World Bank, 40–1 World Health Organization (WHO), 37 Young, Allan, 5, 213

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