Chronic Conditions, Fluid States: Chronicity and the Anthropology of Illness 9780813549736

Chronic Conditions, Fluid States explores the uneven impact of chronic illness and disability on individuals, families,

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Chronic Conditions, Fluid States

Studies in Medical Anthropology Edited by Mac Marshall Advisory Board William Dressler Sue E. Estroff Peter Guarnaccia Alan Harwood Craig R. Janes Sharon Kaufman Lynn Morgan Catherine Panter-Brick Stacy Leigh Pigg Lorna Rhodes


Chronic Conditions, Fluid States Chronicity and the Anthropology of Illness






Chronic conditions, fluid states : chronicity and the anthropology of Illness / edited by Lenore Manderson and Carolyn Smith-Morris.     p.    cm. — (Studies in medical anthropology) Includes bibliographical references and index. ISBN 978-0-8135-4746-6 (hardcover : alk. paper) ISBN 978-0-8135-4747-3 (pbk. : alk. paper) 1. Medical anthropology. 2. Chronic diseases. 3. Chronic pain. I. Manderson, Lenore. II. Smith-Morris, Carolyn, 1966– GN296.C47 2010 306.4'61—dc22


A British Cataloging-in-Publication record for this book is available from the British Library. This collection copyright © 2010 by Rutgers, The State University Individual chapters copyright © 2010 in the names of their authors All rights reserved No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, or by any information storage and retrieval system, without written permission from the publisher. Please contact Rutgers University Press, 100 Joyce Kilmer Avenue, Piscataway, NJ 08854-8099. The only exception to this prohibition is “fair use” as defined by U.S. copyright law. Visit our Web site: Manufactured in the United States of America


Preface and Acknowledgments


Introduction: Chronicity and the Experience of Illness




The Idea of Chronicity 1

The Chronicity of Life, the Acuteness of Diagnosis




Globalizing the Chronicities of Modernity: Diabetes and the Metabolic Syndrome




Is “Chronicity” Inevitable for Psychotic Illness?: Studying Heterogeneity in the Course of Schizophrenia in Yogyakarta, Indonesia




Gender and the Experience of Illness 4

Male Infertility, Chronicity, and the Plight of Palestinian Men in Israel and Lebanon




“Half a Woman”: Embodied Disruptions and Ideas of Gender among Australian Women LENOR E M ANDER SON






Ecuadorian Women’s Narratives of Lupus, Suffering, and Vulnerability




Why Women Don’t Die in Childbirth: Maternal Survivorship in Badakhshan, Tajikistan




The Clinical Interface 8

Chronic Illness and the Assemblages of Time in Multisited Encounters




Chronicity and AIDS in Three South African Communities




Disability and Dysappearance: Negotiating Physical and Social Risk with Cystic Fibrosis




Caring for Children with Special Healthcare Needs: “Once We Got There, It Was Fine”




Chronic Conditions, Health, and Well-Being in Global Contexts: Occupational Therapy in Conversation with Critical Medical Anthropology



Afterword: Chronicity—Time, Space, and Culture A RTHUR K LEINMAN AND R ACHEL H A LL-CLIFFOR D









People strive to be normal; however, the realities of life are very different from the ideal. People have compelling concerns and precious stakes to defend; and although they would be “quite helpless without the power of cultural templates to guide and sustain them” (Uni Wikan, quoted in Becker 1998), they live their lives uniquely. In other words, events occur continuously that do not fit with a vision of how life should be, and when they do they affect people’s individualized views of the world. (Becker 1998: 16)

Gay Becker’s work on asthma and infertility highlights the ongoing nature of chronic health conditions—underlying persistent states that in their everyday presentation, and in their lived experience, are always variable. Our book is a critical inquiry into this variability and fluidity, and into the value of chronicity as a way of theorizing poor health in diverse cultural contexts and political and economic settings. Gay Becker’s 1998 book, Disrupted Lives, was also the centerpiece text for a graduate seminar designed to explore the themes and questions of this volume. Becker was worried that anthropologists became, sometimes, distracted by larger social forces, failing to see the details in everyday lives. “Continuity is an illusion” (1998: 190), she wrote, part of American cultural ideology alongside independence, physical capacity, and progress. As she illustrated, these values were embodied, metaphors in the lives of those who had lost control over self, whose identities were fractured, who no longer had (or no longer believed in) a predictable, everyday life. For ethnographers whose gaze, whose obsession with the details of everyday lives, led them to study the so-called chronic diseases, Becker’s words are a platitude. But her words bear repeating and amplification to others whose gaze is on either the shorter currents of suffering, or the larger social forces under which suffering can be homogenized. And so, much in our volume will amplify and expand upon the notion that continuity is illusory. Becker’s other insight—the particularity of the cultural environment of the United States—is equally important, and throughout this volume, individually and collectively, we tease out the chronicity of experience in different social, economic, political, and cultural settings, and the different textures of inequality that shape the lived experiences of disease.




Medical anthropologists have embraced the nomenclature of biomedicine, including the idea of chronic. But the meaning and effects of illness labels have altered dramatically in the twentieth and twenty-first centuries, affecting irreversibly our ethnographies and their impact. While categories such as chronic and acute enable us to communicate across disciplinary boundaries, their use has produced a tense ambivalence. The volume now in your hand has grown from this tension. The psychological, social, and material benefits that derive from the labeling of illness, for those living with illness, limited functions, or underlying pain or poor health, relate as much to one’s position(s) in society as to the quality and character of the affliction. But when we first began the collaboration that led to this volume, we felt that too little attention was being paid to these structural, social, and circumstantial positions so fundamental in shaping poor health outcomes and the particular difficulties of living with illness. So we began to work to bring together scholars engaged by these contradictions and complexities, working in diverse contexts in which the uncertainties of chronic illness were always set against and complicated by the uncertainties of structural inequalities. The first opportunity we had to tease out these issues occurred in the 2007 Presidential Session at the American Anthropological Association’s annual meetings, held in Washington DC. Entitled “Inequalities, Chronic Illness, and Chronicity,” the session was dedicated to Gay Becker, whose work had inspired so much of our own and who sadly died early that year. The 2008 panel of the same title at the Society for Applied Anthropology annual meetings rounded out the conversation, and led to our finalization of this volume’s prospectus. We were extremely gratified to begin work promptly with Rutgers University Press, and to join its series Studies in Medical Anthropology. Lenore Manderson: My work on chronic health conditions and disability has been supported by an Australian Research Council Federation Fellowship, Victorian Science, Technology and Innovation Award, and project grants from the Australian Research Council and the National Health and Medical Research Council. I am also very grateful to the support provided by The University of Melbourne and Monash University. Across the globe, in working in this field, I have sustained established friendships and cherished the development of the new: in Malaysia, Zaliha Omar and Rameezan Abdul Rahim; in Thailand, Siriporn Chirawatkul; in Laos, Phoumintr Bouathep; in Burma, Than Toe. I owe many intellectual debts to graduate students, colleagues, and friends. To name some is to overlook others, and so I am mindful that I risk offending. I thank especially, even so, Pascale Allotey, Elizabeth Bennett, Elizabeth Hoban, Milica Markovic, Devva Kasnitz, Renata Kokanovic, Bhensri Naemiratch, Susan Peake, and Narelle Warren. Coediting can lead to great tensions and disappointments, but not in this case: I am very fortunate to have had Carolyn Smith-Morris as my coeditor and collaborator, and still to have her as a dear friend. Although this was rarely



their intention, various members of my family ensured my sensitivity to the personal dimensions of the chronic and acute. My husband Pat provided me with rich examples of the value of creatively resisting the conventional trajectories of aging and chronic conditions; as ever, he is also my stalwart supporter and friend. And Tobi, my son, and Kerith, my daughter, as always, ground me, challenge me, tease me, and make the personal the greatest reward. Carolyn Smith-Morris: In the years of thought and research that produced this volume, my professional tutelage came from Carolyn Sargent, Caroline Brettell, Victoria Lockwood, and Lenore Manderson herself: abiding mentors, tenacious advocates, and fast friends. I am also grateful for the sage advice and guidance of Van Kemper in the SMU Department of Anthropology, and to Mark Nichter, Marcia Inhorn, and Lynn Morgan who have so generously taken interest in my work during the pre-tenure years. The good humor and proper perspectives of these mentors were salve and antidote when my errors became embarrassingly great. I am genuinely honored and grateful to several other sources of intellectual and professional navigation: Nanette Barkey, Susan Erikson, Tom Leatherman, Sunday Eiselt, and Nia Parson who will forever be among my favorites in the field. I would be remiss not to express my gratitude for the professionalism, reliability, and humor of those who made the daily work hours pleasant, especially Pamela Hogan. I am likewise indebted to my students, both graduate and undergraduate, at SMU. I am especially grateful for the intellectual contributions of students in the Fall 2007 seminar on Globalization and Chronic Disease at SMU: Shauna Bowers, Kyle Burns, Linda Farrell, Jessica Lott, Amir Mehdizadeh, Fiona Nicholson, and Morgan Rains. Thanks to my husband, parents, and in-laws, whose support is so much appreciated. And especially, I acknowledge the daily discoveries of my daughters Lauren and Cecelie, who are simultaneously a great distraction and a reliable inspiration for my own work. Finally, the fieldwork that informs this effort was made possible by funding from the National Science Foundation, the Agency for Health Care Quality and Research, the Wenner-Gren Foundation, the Maguire Center for Ethics and Public Responsibility at SMU, and the University Research Council at SMU. We both are indebted to Kathleen Nolan and Bharati Kalle at Monash University, for their meticulous technical support, professionalism, and keen interest in our work. Finally, we are grateful to Mac Marshall, the series editor, and to Adi Hovav and Alison Hacks, our editors at Rutgers University Press, for their flexibility, confidence, and quiet enthusiasm. Lenore Manderson, Melbourne, Victoria, Australia Carolyn Smith-Morris, Dallas, Texas, United States of America May 20, 2009

Chronic Conditions, Fluid States

VVVVVVVVVVV Introduction Chronicity and the Experience of Illness L E N O R E M A N D E R S ON A N D C A RO LY N SM I T H -MO R R I S

In the past century, the world has witnessed dramatic epidemiological change. For reasons that we explore in this volume, the relative weight of infectious

disease and injury on mortality and morbidity has declined, and instead, in the poorest and the wealthiest of nations, extended, often lifelong medical conditions predominate. These conditions neither develop nor continue in a vacuum, but are profoundly shaped by persistent injustice, inequality, poverty, and physical expressions of structural violence. These are all chronic problems; they interact with, contribute to, and shape the experiences of living with chronic health problems. These health problems include both infectious and noncommunicable diseases. Our intent in this book is to draw on the idea of chronicity to heighten sensitivity to the structural factors that create, maintain, and produce fluidity and flux in these disease patterns, their management, and outcomes in the twenty-first century. As we will elaborate here, anthropologists have exposed the structural factors behind everyday suffering for some decades, but we have been slow to theorize the relationship between social forces and epidemiology, let alone our own discourses of illness. Certain ideological assumptions remain invisible to us, and therefore influential in conversations that would otherwise be more vigilant of structural violence around the globe. The nomenclature that categorizes some illness categories as chronic is one such assumption. Our task has been to challenge a single, hegemonic conceptualization, to illustrate its role in supporting existing power structures behind global health paradigms, and to reaffirm the habitus of illness as a segregated, individual, and stigmaproducing event. Forty-seven percent of global morbidity is now attributable to what are called chronic conditions. The use of a temporal marker—the chronic or longterm aspect of disease—has largely gone unquestioned until now, at a time when some previously acute and infectious diseases can be survived long term, and




when medical technologies allow a symptom-free experience of “permanent” medical diagnoses. The old dichotomies—acute and infectious on one side, noncommunicable and chronic on the other—no longer hold, although neither medical anthropologists nor other health social scientists have done much to destabilize this chronic–acute typology or the representations and organization of diseases that are its fallout. Instead, medical scientists, clinicians, policy makers, patients, and consumers struggle to accommodate new technologies, interventions, and pharmaceuticals that potentially disrupt the paths and everyday impact of ill-health and disease. At the same time, they must interpret the meaning of a given diagnosis, in terms of cure and control, recovery and remission, in the economic and technological context of their own environment. In the past fifty years, technical, demographic, and epidemiological changes globally have placed new demands on health care and medical services, financing and insurance, social and economic life. International agencies, communitybased organizations, popular presses, and departments of health in both poor and rich resource settings have consistently played on this theme of change, its linearity, and its inevitable trajectory. As an example, Geoffrey Cannon from the World Health Policy Forum drew attention to the intersectoral and global nature of epidemic chronic diseases, and called for policies and programs involving “not only public health, but also finance, agriculture, manufacture, employment, development, trade, transportation, and education” (Cannon 2001: 1; 1992; Murray and Lopez 1996; World Health Organization [WHO] 1999). The WHO has also called for global action to prevent chronic disease and avert “millions of people dying prematurely and suffering needlessly from heart disease, stroke, cancer and diabetes” (WHO 2005b, 2005a). And in November 2007, the director general of WHO, Dr. Margaret Chan, in a speech to the directors of WHO country offices, reiterated the need to address the rise of chronic diseases, because they “now impose their greatest burden on low- and middle-income countries. Many chronic diseases require lifelong care, vastly increasing the burden on health systems. These diseases also increase costs—for households, health systems, and government budgets” (M. Chan 2007b). The urgency of these statements echo the views of many academics, writing from and about diverse settings, in editorials, monographs, and research articles, of the health of indigenous, immigrant, urban, and rural communities, and of the escalation of contributory factors associated with the increased incidence and treatment costs of chronic diseases (Anderson and Chu 2007; Horton 2005; Hoy et al. 2007). This global rhetoric takes the definition of chronic as given and its epidemiology as stable. In his introduction to a special issue on medical anthropology and chronic disease in the journal Social Science and Medicine, Anselm Strauss (1990) drew attention to the social and cultural complexities of chronic diseases and their distinctiveness in different settings. In the issue, contributing authors illustrated how social science and particularly medical anthropology contributed



to understanding chronic—in the context of the volume, noncommunicable conditions. They relied substantially on a conventional biomedical paradigm of temporality (long term versus short term) and linearity. While in recent years anthropologists have turned to illustrating the ways in which illness tracks social inequality and vulnerability, we need also to be critical of the paradigms that govern diagnosis, treatment, and survival, with the imprecision, elisions, and slippages that occur in reference to chronic disease, with the presumptions of consistency in patterns of disease, and in the capacity for its management and control. We take this remissness as a point of departure. The need to worry away at the discourse of the chronic and chronicity is a central theme. The distinctions between chronic and acute, communicable and noncommunicable, are social facts. In the chapters that follow, we challenge these dichotomies of illness and the presumptions that underpin them. We argue that this focus inaccurately captures the lived experience of illness over time and in different settings, while minimizing the social and cultural contexts and globalizing forces that pattern health and well-being. The idea of chronicity to explain individual and local lifeworlds provides us with a way to question public health discourse and health outcomes. Despite diagnostic, descriptive, and terminological inaccuracies that make statistical estimates problematic, chronic conditions are increasingly prevalent. This provides an opportunity to interrogate the causal links and associations between society, economy, and polity and the distribution and outcomes of disease (Frenk et al. 1991). The premise of this diagnostic dichotomy is now false. Yet, the epidemiological transition, collapsed into a chronic–acute dichotomy of patterns of disease, has had a political use, directing research, shaping insurance policies, investing in hospitals and pharmaceutical advances, and the like. The associated representation of conditions as either/or, patterned predictably on a “natural history of disease,” denies the fluidity of life states that are simultaneously biological and social. This insight was the starting point for this volume: By foregrounding the contexts of lifelong health status, so emphasizing chronicity in relation to context, we aim to instantiate the diversity of experience and to acknowledge the suffering of individuals and communities, institutions and states.

The Health Transition As we have already argued, two binaries—chronic–acute and communicable– noncommunicable—have dominated representations of the health transition and everyday discourse of illness. The distinction of chronic–acute is inaccurate even in strictly biomedical terms, since the notion of acute fails to distinguish between: (a) conditions that are relatively benign and self-limiting; (b) those that are life threatening; and (c) those that shift from an acutely symptomatic phase



to an extended period of poor health and physical limitations, as is characteristic of numerous medical conditions that have effective medicinal or therapeutic treatments. The transmissibility or communicable nature of a condition seems to be a clearer distinction. However, the role of heliobacter pylorus as the cause of stomach ulcer, a condition long considered the somatization of stress, and the role of human papilloma virus in the development of cervical cancer have unsettled our assumptions about the noncommunicability of many diseases. The dichotomies are even less helpful in explaining how modern life imprints on the body and shifts social understandings of biological processes. Such imprints have a long history, however; relatively rapid changes in the production of and access to food, diet, health, and illness date from the earliest trade relations and later colonization. Slower changes to the environment— climate, biota, and patterns of human settlement—have also been reflected in disease prevalence and life expectancy. Changing patterns of disease globally have been framed in recent years largely by theories of the health transition. As Jack Caldwell and colleagues (Caldwell 1993, 2001) have illustrated, the health transition conventionally associates the decline of infectious diseases and the concomitant rise of noncommunicable and lifelong diseases with early industrialization, the successes of biomedicine and modern surgery, and the impact of hospital-based medical and public health interventions. The introduction of piped and potable water, improved sanitation, vaccinations, and infection control measures, for example, all contributed to drive down severe morbidity and early mortality. From the mid-nineteenth century and early twentieth century, in centers of imperialism and increasingly in colonized states, immunization, maternal and child health care, and improved nutrition further reduced infant and child mortality rates, severe morbidity, and the incidence and prevalence of infectious disease. A familiar paradigm of development unfolds with this account of changes in epidemiology. The science, policies, and programs of industrialization in the center and periphery tackled diseases that first threatened the ruling elites, then those who protected the state and labored to produce its products and services. The costs associated with replacing labor, through constant local and immigrant recruitment, and concerns about defense and security led to an increased number of interventions designed to reduce infant and child mortality and enhance the health of workers (Curtin 1989; Davin 1978; Manderson 1996). From the mid-twentieth century, health status and patterns of disease changed notably with the improved delivery of public health programs, wider access to medical care, and more effective prevention and control measures against infectious disease. These shifts extended from the developed to the developing world as artifacts of independence and political development, with enhanced health systems and health policy, with investments in economic growth, and with development aid and loans. Industrialization, urbanization, sedentary occupations, changes in food supplies, the increased consumption



of processed foods, and smoking all contributed to the rising incidence of noncommunicable diseases and chronic conditions, and are now included in any formulaic explanation of global epidemiological trends and the burden of disease (Seale 2000). In this volume, Carolyn Smith-Morris and Dennis Wiedman, in particular, both refer to the way in which history—cultural contact, colonialism, market expansion, globalization—caused diabetes mellitus and other iconic chronic noncommunicable conditions. The lived conditions of industrialization have come to dominate around the globe. There has been a universal, near unidirectional trend toward more sedentary occupations, for paid and domestic work increasingly to require less energy expenditure, for people to lack discretionary time to exercise and to prepare their own food. Few people worldwide grow their own food entirely, and those who have limited resources have an especially narrow choice; of necessity, they are likely to purchase inexpensive and so nutritionally inferior and poor-quality foods. Dietary changes, involving the increased consumption of energy-rich food that has been preprepared, processed, and with additives have resulted in the increased incidence of specific noncommunicable disease (e.g., diabetes), but also in other bodily conditions such as food allergies (Dressler et al. 1996; Bindon et al. 1997; Janes 1999; Baer et al. 2003). While industrialization and urbanization have been presented as the conjoined twin evils of the health transition, changes in agriculture, including mono-cropping and the use of insecticides and pesticides, the introduction of irrigation, and changes in seed stock, have also contributed to the rising incidence of noncommunicable disease (Konradsen 2007; Monda et al. 2007). An emerging biomedical paradigm, based on a “natural history” of chronic diseases (Foucault 1975; Zola 1972), enabled clinical scientists and clinicians to frame the experience and management of chronic conditions in a particular way, one sustained to the present. Life expectancy continues to be an important index of human development and of how well a given government is performing across sectors and services (Nussbaum 2000; United Nations Development Programme [UNDP] 2003). But concurrently, the incidence of long-term, degenerative conditions increased. The rise in rates of chronic disease, together with the declining importance of epidemic infectious diseases (polio and tetanus, for instance), consequently becomes a symbol of arrival for many industrializing nations (Kleinfield 2006). In high-income industrialized countries, the predominance of conditions that may result in disease, the prevalence of noncommunicable diseases across populations, and their presence in an expanding aging population are taken-for-granted demographic facts. Yet these routinely impact on economic and political life. Obesity, to take one example, compromises health and well-being, and may result in hypertension, diabetes, and chronic kidney disease. Osteoarthritis, as another example, profoundly affects mobility and social engagement, and for many, pain and its management dominate their daily lives.



As Wiedman explains in this volume, global epidemics of metabolic conditions like obesity and diabetes are a result of economic transition: from agricultural subsistence to one of industrial wage labor in urban contexts. The resulting decrease in physical activity and overconsumption of high-fat, nutritionally poor foods consistently and reliably produce poor metabolic health. Indeed, in contemporary agricultural, low-income countries, the combination of long life and comorbidity is a marker of wealth—minimally, it is a luxury of the middle class and very rich (Kleinfield 2006; Arnuna and Zotor 2008; Astrup et al. 2008). Yet even an income- and expenditure-driven distinction between countries misses the health status changes that affect populations everywhere due to globalization (Harris 2004; Whiteford and Manderson 2000; Farmer 2003). The most prevalent long-term conditions—cardiovascular disease, cancer, diabetes, mental illnesses—do not respect the social boundaries of class or wealth (Menendez et al. 2007; Ruchirawat et al. 2006), as Byron Good and his colleagues illustrate for schizophrenia in this volume.

Challenging Biomedical-Centrism The global transition into high prevalence of long-term disease states has a complex history. Uta Gerhardt (1990) illustrated in the Social Science and Medicine special issue that while baseline biological and clinical science research dates from the late nineteenth century, “heroic medicine” had its moment much later, in the second half of the twentieth century. Pharmacological research led to the development of life-extending drugs such as anticonvulsives and beta-blockers; clinical and biotechnical research led to procedures such as dialysis, transplant surgery, open-heart surgery, and artificial replacements. These advances proceeded parallel to an explosion of basic science research aimed at describing the “building blocks of life” and more mundanely, at isolating the pathogenic organisms and processes that cause chronic conditions. In this intellectual and sociopolitical environment, the hegemony of the chronic–acute paradigm was established, with epidemiological data and biomedical technologies used first to affirm and later to ensure the invisibility of a biomedico-centric view of health and well-being. Increasingly, however, the development and persistence of noncommunicable, degenerative, and long-term conditions have occurred within a moral narrative of lifestyle excess and cost. That is, the explanatory variables offered to account for shifts in the emergence and growing prominence of noncommunicable diseases are the costs of development, industrialization, urbanization, and “good living.” Noncommunicable conditions are represented routinely not simply as the inevitable consequences of longevity, but as the result of sedentary occupations, sedentary lifestyles, and excess (of diet, alcohol consumption, and smoking). They are commonly associated with overnutrition, obesity, and physical inactivity (Joe and Young 1994). Parsimony and manual labor, the moral



discourse insinuates, protects against such lifestyle diseases. But as Ferzacca and others illustrate in this volume, a simplistic assessment of the health transition penalizes those who are poor and lack resources, time, information, and services. Accordingly, the anthropological commitment to elucidating the causes of health inequities in modern society is propelled by ideals of social justice and human rights. The pressing question remains why so little attention has been paid in the past two decades, and earlier, to the problematic assumptions behind these dichotomies, while the epidemiology, burden of disease, and escalating health costs would all point to the reverse. The orthodoxy that associated the prevalence of chronic conditions with first world conditions has been consistently disproved. Conventional gaps in knowledge emerge because of this type of mismatch between research efforts, resources, and the prevalence of conditions. Yet, hospital services, insurance companies, and pharmaceutical industries share a particular interest in maintaining this disease paradigm, since existing profits already flow from it. In addition, the increasing predominance of continuing health problems in poor countries profoundly affects those emerging economics and their ability to participate competitively in global markets. The damage caused by HIV to local and regional economies, polities, and human capital makes this very clear. Discourse based on these flawed dichotomies, therefore, reinforces a dependency on first world health knowledge and perspectives. One of the difficulties in attending to long-term, noncommunicable conditions, aside from the challenges in terminology, relates to their invisibility. Acute illnesses, including many infectious diseases, are often dramatic in their onset and course; other communicable diseases leave striking evidence on the body and in relation to capacity. Consider the visual impact of, and the residues of fear associated with, smallpox, bubonic plague, leprosy, and polio; the continued telling of the stories of suffering linked to cholera and tuberculosis; the stigma associated with elephantiasis due to infection from filariasis; the anxiety in face of the threat of avian flu or a prion disease such as bovine spongiform encephalopathy (BSE or mad cow disease) or kuru (Lindenbaum 2001); or the suspicions produced by emaciation from AIDS. In contrast, a person does not usually take on a particular appearance as a result of heart disease or diabetes; in the case of cancer, the effects on the body from its treatment (hair loss from chemotherapy) are what make the condition public. Global discourses on the pervasiveness of “chronic” conditions—both from infectious and other causes—further illustrate this point. In 2005, WHO posted images on the Web of people living with chronic disease from Brazil, India, Pakistan, and United Republic of Tanzania, using the slogan “Face to face with chronic disease” to draw attention to its global prevalence (de Bode 2005). A few of the images selected for the photo gallery capture the visibility of conditions or their complications. Jonas Kassa, a sixty-five-year-old man from Tanzania, is depicted sitting in a wheelchair, his amputation (by inference due



to uncontrolled diabetes) easily discerned. But there are no visible signs of disease for others identified in the legends of the photographs as having chronic disease: diabetes, heart disease, blood pressure, and stroke, but also cancer and trachoma, are not discernible states. Hearing deficiency is neither visible nor a disease; its graphic inclusion is potentially confusing. Even obesity and edema in these photographs are not obvious. The relevance of the pictures become evident only when viewed in context: personal stories of conditions that are the consequences of untreated infections (meningitis, measles) and that create and are exacerbated by isolation, household poverty, and inadequate medical care and health services.

The Globalization of Chronic Illness Noncommunicable diseases and long-term, chronic conditions now account for around 60 percent of global mortality (fifty-seven million deaths) annually and almost half (47 percent) of the global burden of disease, a measure that— although problematic—captures the political and economic significance of the different conditions and their severity. These conditions, including both mental and physical health problems, often co-occur. The risk factors for chronic diseases, such as diet, physical inactivity, and smoking, are common worldwide, reflecting changed living conditions and behaviors associated with industrialization and urbanization, and economic and political forces of globalization (see Wiedman and Good et al. in this volume). Yet we have a limited understanding of how globalization—as a force, a process, and a set of relations—patterns the distribution and trajectories of disease and poor health. Several facts illustrate the centrality of globalizing forces to our interrogations into health and disease. The first, directly impacting individual bodies and their risk for poor health, is the global organization of work (Kabeer and Mahmud 2004; Moore et al. 2003; Beaglehole and Yach 2003). The outsourcing from resource-rich to resource-poor countries of services (IT, telephone exchanges) and manufacturing (garment and electronics industries) results in both the redistribution of relations of production and the risks associated with specific conditions of labor. Workers in poor countries are less likely to be protected by legislation, surveillance, and unions, and are more likely to work in unsanitary and unsafe work settings (Hogstedt et al. 2006). Changes occurring in the conditions of production, including in primary as well as secondary industry, precipitate constant shifts in the location of work and therefore in the economic security of workers globally. Manufacturers have shifted factories from China to Bangladesh and Vietnam, for instance, to take advantage of laxer work conditions and lower wages, creating unemployment in the original factory settings while shifting the conditions of risk and vulnerability to occupational injury to new environments. The health effects of poor conditions of labor extend beyond the fields of direct risk: Injuries occur as a result of speed



where workers are paid by unit; women suffer from reproductive tract infections and incontinence because of limited time to use toilets; personal safety is undermined when workers must go home in the dark. Epidemic health conditions that once were associated with subjugation by gender and ethnicity— musculoskeletal problems and headaches among clerical workers, for instance, or lower back pain among immigrant workers—are now conditions among people working in factories and cottage industries in an industrial periphery as a result of globalization (Choobineh et al. 2007; Ahonen et al. 2007; Piedrahita 2006; Quinlan et al. 2001). First world workers are mindful of exploitations that occur with outsourcing, the vulnerability of poor workers to retain their employment, and their inability to challenge their conditions. But first world workers have interests in tension with the conditions of labor in developing countries: Outsourcing to poorer country settings strips workers in capitalist centers from employment, complicating global relations and stretching the gaps between rich and poor, with consequent effects on their health status and long-term resilience and well-being. Both Liese and Miles, in this volume, touch on these issues indirectly. In Liese’s case, men depart Tajikistan for Moscow in search of work, leaving their wives alone in a region that is both dangerous and inhospitable. The women with whom Miles works are already part of a global economy, struggling in urban settings, their ability to work compromised by pain and accommodated by discourses of gender. Many diseases marked by a slow deterioration in bodily function are linked discursively to “lifestyle,” as noted earlier and in the literature on the health transition, particularly to food consumption and smoking. The export of the idea of a lifestyle, the prestige associated with its components, its marketing in advertising, and the supply of commodities are all associated with globalization; interventions to address these lifestyle factors by neoliberal philosophy (Rose 2006). Globalization is both a practice and a process, describing the exploitation of markets that feed into and sustain myths of modernity, the complex vectors of knowledge and communication systems, and the two-way flow of goods, ideas, values, and technologies. Coca-colonization and McDonaldization are tropes of globalization and Americanization, dating from the 1950s and 1960s with the Cold War and then Vietnam (Leatherman and Goodman 2005; Ritzer 1983; Zimmet 2000). In the early twenty-first century, no country has such hegemony. The outcome of globalization now is the ubiquity of standardized, Fordist products, the purchase and preparation of food, styles of eating, and other behaviors. A tourist can move from Caracas to Beijing to Addis Ababa and know that she can buy franchised or locally manufactured global goods that use the same ingredients and styles of preparation. Franchised Krispy Kreme doughnut stores promote their trademark product in Jeddah and Hong Kong. Products associated with modernity and success—television, computer games, fast food dense in trans fat and sugar—are readily available globally, and appeal to local not tourist markets;



at the same time, of course, Westerners can buy or prepare their own injera (bread) and kitfo (minced beef) wherever they are. Moreover, it is possible to buy a T-shirt with Addis Ababa written in the cursive style of Coca-Cola, providing the company with effective free advertising. More importantly, the T-shirt and its genesis are described on an international blog to which anyone can contribute— although in fact, the T-shirts are manufactured in Los Angeles “in an absolutely sweatshop-free environment” and marketed globally online by American Apparel ( 2008). But the spread of franchised and trademarked goods is not simply about a global market space; it is typically associated with rapid changes in obesity and patterns of disease, hence the recurrent use of “epidemic” now in the discourse of weight gain and fatness as well as chronic conditions (Prentice 2006; Nguyen et al. 2007; Monda et al. 2007). To a significant degree, medical anthropologists and other social scientists have been seduced by this discourse of crisis. It is a discourse driven by drug companies, private medical services, and other global technological interests, multilateral organizations, and health professionals. The discourse keeps intervention efforts focused on diagnosisand treatment-related aid, rather than on the structures of a healthy society that undergird population health. The authors in this volume suggest that many aspects of what appears to have been the inevitable expression of a global, capitalist economy are invisibly tied to biomedical meaning systems. So in writing of globalization, we refer to the travel of ideas, technologies, resources, materials, power, and economies around the globe (Harris 2004; Kawachi and Wamala 2007; McMurray and Smith 2001), but we refer also to the cultural baggage that attends the capitalist world economy—aspects like a linear organization of time, notions of autonomy and individualism, definitions of personhood and “rational man,” and ideas around individual responsibility for illness and its prevention (Rose 2006; and particularly Ferzacca, this volume). Health policy, hospital administration, primary health care, ancillary medical services, the training of medical and allied health professionals, and health promotion and health education have been internationalized and globalized. Globalization includes the international production of discourse that drives these, determining the focus of research efforts, control activities, and the expenditure of funds. To a significant extent, international discourse emphasizes that chronic diseases need long-term expensive fixes while acute crises can be redressed with greater, faster impact, as a result of which funds are more easily addressed to acute conditions. For this reason, the use of the rhetoric of epidemic in relation to obesity and diabetes provides political and financial mileage. Routinely, responses to health problems are rehearsed in international fora, professional associations, and multilateral agencies, by their own experts and committees, with these transposed to local policies and programs with outside financial and technical assistance, without attention to local conditions (Whiteford and Manderson 2000). Biomedical dominance and globalization work together to open up new markets for techniques of disease



management, treatment protocols, and drugs (Van der Geest and Whyte 1988; Whyte et al. 2003). Populations are routinely exploited by pharmaceutical companies, through the outpricing of products in some cases (antiretrovirals, for instance) and the promotion of lifetime dependence on medication in other cases (hormone replacement therapy, for instance). Yet concurrent with hegemony of biomedicine, complementary and alternative medicines are globalized and institutionalized, partly in response to consumer interest in modalities that promise a way of dealing with unremitting pain and incurable conditions.

Problematizing the Dichotomy We referred earlier to the special issue on chronic disease of Social Science and Medicine in 1990. Few monographs or edited collections have built on and extended this research and made sense of such conditions in the context of the chronicities of everyday life, although there is an intellectual genealogy that is important to summarize. The early contributions to anthropological research on chronic conditions have tended to draw attention to local understandings of disease causality, prevention, and treatment, illustrating cultural variability and a poor fit between lay and biomedical explanatory models (as postulated by Kleinman 1980). They have not, for the most part, been concerned with the presumed polysemy of communicable and acute, noncommunicable and long term, nor taken up the way in which changes in epidemiology, health status, and outcomes are shaped profoundly by social and economic relations at global as well as local levels. As we have illustrated, the chronic–acute distinction in both medical and everyday discourse has been very useful historically for understanding the implications of a biomedical diagnosis. As that meaningfulness erodes under the success of life-extending medications and technologies, the chronic–acute and communicable–noncommunicable dichotomies have become metonymic with a much more political-economic reality. Endemic rates of diabetes within the Gila River Indian Community belie not the secondary genetic factors, but the primarily economic factors that produced nearly ethnocidal impacts on the Pima’s millennia-old farming heritage (Smith-Morris 2006; see also her chapter herein). Unexamined use of the dichotomy has contributed to the invisibility of suffering—specifically, the lifelong suffering of persons with severe, curable diseases who cannot access good care and the chronicity of life more generally, outside of “acute” diagnostic moments. By distinguishing curable disease from that which is incurable, we leave in place biomedical constructs. Our work must encourage counterhegemonic discourses and pragmatic health solutions that address a life span, and lifelong characteristics of susceptibility, identity, and constitution, rather than temporally liminal illness events. Anthropologists have already contributed considerably through interpretive efforts, like biography, narrative, and emplotment, to describe the cultural



context and social constructions of meaning, and of the significance of individual experience of disease in terms of identity and interpersonal encounters. But there remain many questions about how people cope with a particular condition, manage their vicissitude, negotiate the confounding presence of other conditions (i.e., comorbidities), and deal with bodily symptoms that reflect social inequities and injustice. The autobiographical writings on chronic and degenerative conditions by anthropologists (Zola 1982; Murphy 1987) and other work on embodied impairment (Csordas 1995) and disability (Frank 1986, 2000; Ingstad and Whyte 1995, 2007; Kasnitz 2001) provide a broader perspective on the relationship between health status, social experience, and participation in economic and social life, and emphasize the importance of context. This is a central concern to and contribution of anthropology. Cohen (1998), in No Aging in India, for example, illustrates how aging, degenerative disease, and dementia are interpreted in the context of the moral and political economy of the family. Becker’s landmark works (1998, 2000) on chronic illness and infertility; Kaufman’s book (2005) on aging and death in the United States; and Lock’s (2001) work on organ transplantation highlight the complexity of experiences of health and illness, and the need to consider these in specific familial, social, economic, and political contexts. The four chapters in this volume on gender (Inhorn and Birenbaum-Carmeli, Manderson, Liese, and Miles) take similar standpoints, mapping the impact of health conditions, functional difficulties, and disease against gender and its local institutionalization. The research on HIV illustrates the limits to the binaries of acute and chronic and highlights fluidity of disease. A disease with a known history of only a quarter of a century, it has rapidly morphed from an acute, severe communicable disease with relatively quick decline and high mortality to being a lifelong condition, with early death only when social structural factors interfere with access to medication and quality health care (Russell et al. 2007). It is perhaps not coincidental that the condition has been extensively researched by social scientists, including medical anthropologists, illustrating the difficulty in generating theory without a critical mass of baseline research; in the sociology of knowledge of HIV, social research mirrors the incremental processes readily documented in the natural sciences. HIV dominates health research agendas and the flow of funds, with social and behavioral scientists struggling to identify the cultural and psychological keys to behavioral change while scientists in wet-labs search for biological clues to its prevention. Anthropological and other social science research is even more important now that HIV is a question of lifetime management, often complicated by other health problems and by poverty, food insecurity, unemployment, and political instability, as is the case in many African countries (e.g., Gwatirisa and Manderson 2009). As Carl Kendall and Zelee Hill illustrate in this volume, the very presence of categories of experience that inhabit both chronic and acute categories, infectious and yet long term, demonstrate the declining explanatory power of the chronic–acute paradigm (and its variations).



Tuberculosis has similarly transformed into a communicable but longterm condition, albeit one that can be cured rather than simply stabilized with appropriate access to drugs. As Inhorn and Birenbaum-Carmeli illustrate here, infertility, menopause, and weight gain are common bodily experiences, imbued with social meaning and therefore subject to levels of investment, product development, promotion, and intervention that destabilize ideas of bodily change and chronicity. The biomedical paradigm that polarizes acute and curable conditions from chronic sometimes treatable ones ignores much of human experience, yet it underpins the routine use of chronic as a descriptor of most prevalent health conditions today. This suggests a very pedestrian understanding of chronic illness. The approach typically privileges diagnostic categories and emphasizes particular states at the expense of others. In her contributing chapter, Sobo describes the challenges faced by parents of young children with disabling and often lifelong conditions, who must trek between the family doctors and different specialist pediatricians depending on presenting symptoms. Maynard similarly explores the impact of the trajectory of chronic with adults still alive—often beyond their own projected life expectancy—working with (and around) chronic cystic fibrosis. In reality of course, people’s health status rarely follows an “average” trajectory; relatively minor self-limiting conditions (coughs, colds, gastrointestinal upsets) often occur concurrently and may interact with other conditions; with aging especially, people must manage multiple degenerative conditions and ailments from wear and tear, and negotiate the rocky topography of declining health status and fitness. In short, as Ann Miles illustrates for women in Ecuador, the entire life span can be evaluated for periods of suffering and illness, only portions of which are labeled with a diagnosis, be it acute or chronic.

The Problem with Chronic In positioning illness, disease, ailments, and infirmity in the context of globalization, we need to interrogate how notions of chronicity are inherently representative of a particular cultural and historical tradition, the power relations embodied in that tradition, and the differential access to the knowledge production it perpetuates. We have already reflected on how the chronic–acute dichotomy is indexical principally of the biomedical knowledge system. Despite its imprecision, the temporality it references is a cornerstone of the Western European tradition of thought. Historically, the physician controlled both diagnosis and treatment. The authority of the physician, as medical practitioner and as arbiter and enforcer of individualized, self-monitored responsibility in achieving health, is sustained globally, as Liese illustrates for antenatal care and delivery, and Ferzacca for the management of diabetes. Apparent challenges to this explicit hierarchy, such as the primary healthcare movement, rehabilitation, and community participation, are only ever partial and embedded in



established medico-political systems. In managing acute conditions, the physician plays the primary role—medicine finds its heroism in quick action, urgent surgery, and wise and rapid decisions about lifesaving medicine. This, at least, is the theory (see Liese). Chronic conditions continue definitionally; their simple prevention—by a new vaccine—drives much scientific effort, while their routine management attracts far less approbation and reward (see Frank et al., this volume). In this light we draw again on the address of the director of WHO as an example of international rhetoric, who while acknowledging that chronic diseases “impose their greatest burden in low- and middle-income countries,” dismissed their treatment with the flip remark that “we now have packages of interventions that are effective and affordable in every part of the world” (M. Chan 2007a). Often, the challenge of management is shifted to the patient/consumer—the person with a condition that continues to yield suffering, pain, disruption, and uncertainty. Medical anthropologists have argued for reconfigurations or realignments of the temporal assumptions in biomedical care, particularly long-term care. This has important implications for how medical anthropologists relate to and work with their colleagues. In their chapter, Gelya Frank, Carolyn Baum, and Mary Law explore the need to build bridges between anthropology, occupational therapy, and disability studies, so that in partnership we can exploit the structural opportunities afforded occupational therapy and rehabilitation sciences for improved long-term, person-centered treatment. Any emphasis on the acuteness of particular biomedical conceptualizations removes the condition and experience of it from its lifelong, social context. Certain severe acute conditions, such as viral meningitis, can result in serious permanent damage and hence are chronic in outcome for the individual and his or her family, impacting on life chances and opportunities and shaping the deployment of labor, resources, and the educational livelihood and residential choices of others in the household. Other acute conditions, resolved in the short term through extensive and intense medical intervention, have personal lifelong echoes. Cancer has been written about most often in this regard because of the provisionality of declared cure. The use of the term remission rather than cure draws attention to cancer’s chronicity. Notwithstanding the absence of evidence of continued or new pathology, the personal history of cancer is always an evolving one, with any unusual bodily sign indexed against the original diagnosis (Frank 1995; Drew 2003, 2007). People who have had cancer episodically struggle to remain socially embedded while inhabiting what Sobo (in this volume), echoing Sontag (1978), refers to as “the land of the sick.” Ron Maynard explores the greater constant state of illness in his chapter on cystic fibrosis, juxtaposing the representations of the condition: chronic yet relatively short term in terms of life expectancy; sporadically acute in instances of its episodic character; and intermittently moved from foreground to background to foreground again as those who are affected, and their



families, struggle with practical social, economic, and medical disabilities (see also Ferzacca, this volume). Other conditions that present with acute, severe symptoms and are treatable and curable, in some ways, might also be regarded as chronic if viewed with a different lens. Dengue fever is treatable and the person can be cured of the infection, for example, with the outcome of the disease episode largely contingent on early diagnosis and appropriate management. Once infected, the person is immune to the viral serotype (one of four) for life, but he or she is now at greater risk of severe and potentially fatal disease if infected with a different dengue serotype. Prior infection history of dengue therefore positions a person as having a chronic condition, with the risk of reinfection controlled in endemic areas primarily as a result of persistent personal and environmental caution to avoid being bitten by an infected Aedes mosquito. The repercussions of dengue infection, both with respect to the first and to subsequent infections, can have continuing impact on the health and well-being of the family as a whole, because of the necessity of households to quickly find the cash resources for emergency treatment. Householders sell cattle, land, and tools of production and borrow at usurious interest rates, increasing poverty and affecting the ability to act in response to subsequent illness or other events urgently requiring cash. The catastrophic nature of health emergencies has led some authors to write of “iatrogenic poverty” as well as the iatrogenic transmission of disease (Khun and Manderson 2007; Van Damme et al. 2004; Meessen et al. 2006). In contrast, certain chronic conditions may be relevant only when there is need to intervene, at which point the problem is acute. As Inhorn and BirenbaumCarmeli illustrate, using infertility as a medicalized nondisease condition, the acute moment is when a woman wishes to conceive and carry to term. But differential access to health care and its affordability, not technology itself, determines treatment and “cure,” and so access to medical interventions is a product both of geography and economy. In consequence, “curable” forms of disease may have a permanent or longterm impact on identity, resilience, immunity, and other personal and relational variables. As Kendall and Hill illustrate, HIV takes on this same unpredictable character: Infected people depend on access to HAART to avoid early and deeply stigmatized death; a dependency that costs much of the life they are saving in time and effort. Liese’s work in Afghanistan and Tajikistan (in this volume) exposes a related contradiction. The care intended to save one’s life can, for the poorest of the poor, cost them their life. As these examples demonstrate, risk itself is chronic. These observations apply beyond the specifics of disease. A number of anthropologists (Skidmore 2004; Kleinman et al. 1997; Das et al. 2001) have emphasized the chronicity of risk as produced by structural violence, highlighting that risk is a permanent disabling mechanism both due to and despite diagnosis. Inequalities of all kinds, including gender, ethnicity, age, and class, compound and are compounded by disease and the experiences



of chronic illness and disability. This is again clearly illustrated by HIV; the “factures, schisms and inequalities” of society (Baylies 2004: 71) create the conditions of vulnerability to infection with HIV and opportunist infections, and deprive those infected of the care, living conditions, and drugs that could prevent early death (Farmer 1999, 2006; Schneider 2002; Whiteside 2004). Along similar lines, in Life Exposed, Adriana Petryna (2002) documents the impact of the Chernobyl environmental disaster and the suffering that is associated with lives of poverty, hunger, substance abuse, and everyday violence. The continuing escalation of cancer is only one dimension of the chronicity that has followed the nuclear disaster and its environmental and political fallout. We have earlier suggested that the invisibility of many noncommunicable long-term conditions frequently compounds structural invisibility and subordination. The ethnographic literature is concerned predominantly with people who are well not ill—hence medical anthropology’s unique space. But women, the poor, the disabled, the very old, and children are often sidelined from anthropological accounts. Inhorn and Birenbaum-Carmeli, Manderson, Liese, and Miles each illustrate—for Lebanon and Israel, Australia, Tajikistan and Afghanistan, and Ecuador respectively—the power of gender and nation in determining the differential experiences of illness, disease, and dysfunction. That gender influences risk of infection and course of disease, access to treatment, and quality of care, is now well appreciated. Still, gender’s specific impact on men and women varies in different settings, and it remains important to continue to interrogate illness experience through a gendered lens. Yet gender is far better documented than other structural barriers and minority status. As Sobo notes, children who experience disabling conditions or who have incurable illnesses are concealed from view almost completely. Visibility draws attention to power and attracts discussion about interventions, if not also action, by those in power. Diabetes is rendered visible only by the most dramatic surgical interventions to complications (i.e., amputation); as Smith-Morris emphasizes, the long-term symptoms of disease, such as fluctuations in blood sugar, cannot be seen. Likewise, heart disease does not “look” a particular way. In contrast, alcohol abuse is embodied, exhibited in proximate and consequent behaviors (drunkenness, physical violence against others, vehicle accidents, children born with fetal alcohol syndrome). The stigmata of alcohol dependency—and the risk it poses to others, analogous to infection— provokes discourse about intervention (controlling the sale of alcohol, for example). Such interventions are typically market driven and biomedically determined. Long-term experiences do not evoke popular or political demands for structural change. Freedom from flu is a public responsibility, but obesity is an individual liberty or responsibility. Long-term conditions, however categorized, are not stable and are rarely experienced as ongoing and unremitting. Rather, from the onset of symptoms and the decision to seek relief, a person is caught up in the ebbs and flows,



cyclicity and chronicity, of their body and embodied states. Cancer narratives frequently draw attention to the stresses of lifelong anticipation of recurrence after successful treatment. Others in their social worlds may treat people who have had cancer as indelibly sick. Multiple sclerosis similarly forces people into cycles of adaptation and anticipation as a result of intermittent remission and recurrence, with shock waves into social and economic life (Webster 1989; Green et al. 2007; Ray and Street 2005; Dyck 1995). Epilepsy may involve recurrent seizures for an extended period and yet be time limited, as often occurs with infants and juveniles; seizures may be infrequent or rare, severe or minor, or may occur several times a day. While the onset, duration, and intensity of seizures reflect that the term epilepsy is used to refer to various conditions with different etiologies, management strategies, and prognoses, there is also considerable variation in the experience of specific conditions and its impact on individuals. Asthma, similarly, is highly variable in terms of etiology, onset, episodicity, severity, and management. Other chronic conditions may be difficult to diagnose. Women with ongoing gynecological problems, as Manderson illustrates, experience disbelief and marginalization when their reports of suffering cannot be verified by technology. They must often actively resist the views of others, medical and lay, who interpret self-reports of poor health as instantiation of moral lassitude and hyperimagination. Once women decide that their levels of body discomfort are atypical and extreme, they must embark on an extended journey through medical territory to gain diagnosis and test alternative treatment paths. Such conditions may escalate dramatically for any number of reasons, abate with medication or pregnancy, then intensify. But for these women, an expectation of good health propels them to seek diagnosis and treatment. This sense of responsibility contrasts sharply with the Ecuadorian women of whom Miles writes. They make sense of pain and disempowerment from autoimmune disease through a rhetoric of women’s god-given suffering. Liese’s contribution is also pertinent to a challenge of naturalized women’s suffering. For the women in her study, childbirth is an acute event, but one that is informed by lifelong determinants of vulnerability, the social construction of womanhood, and embodied social roles. The circumstances of everyday life in Afghanistan and Tajikistan define what will be long term and what will be short term. Other conditions may be asymptomatic for years; and any condition may be complicated by comorbidities. As (Singer 2009) reflects in his conceptualization of syndemics, two or more diseases may coexist—HIV and TB, diabetes and cardiovascular disease, malaria and schistosomiasis—with the resultant excess burden of disease and the effects of interactions of the two (or more), both at the level of physiology and at the levels of individual psychology and society. People with chronic conditions, without resources, information, or authority, are typically marginalized by the health system and sidelined by family and community. Socioeconomic conditions associated with the high prevalence of



both infections and noncommunicable diseases, chronic and acute, produce widespread structural and personal disadvantage. Coinfections shape personal experiences of diagnosis, treatment, and prognosis, but also the life opportunities of entire communities. Health care is fragmented, as Sobo illustrates for children; this applies equally to adults, as Frank, Baum, and Law illustrate in relation to rehabilitation, occupational therapy, and the ongoing care for people with disabilities. Chronic Conditions, Fluid States offers new perspectives of the experience of chronic illness; explores meanings of chronicity, persistence, and fluidity; troubles the conventional divisions of illness, disability, and health; and reflects on how global economic relations shape responses to illness, ailment, and disability (Frank and colleagues, and Kleinman and Hall-Clifford, this volume). At global and local levels, we provide evidence of the uneven impact of chronic illness on individuals, families, and communities. Through our choice of examples, too, we draw attention to the uneven impact of and on politics, economics, and lived experience. Since the so-called chronic conditions now represent the greater portion of all global morbidity, and lifelong conditions of various etiologies (infectious and noninfectious) predominate, a reconsideration and reconstitution of the old temporal distinctions is called for. Increasingly, chronic, long-term conditions are not naturally occurring ones, but are those for which the political will and economic resources are simply not brought to bear for a given community. Throughout this volume, we draw on the idea of chronicity to heighten sensitivity to the structural factors in health inequity. Exposure of the diversitylimiting and intellectually restricted effects of this concept is an important step toward reducing their influence. We privilege concepts of lifelong chronicity and lived experiences of continuity in order to decenter the treatment of illness as a segregated, individual, and stigma-producing event. The old dichotomies—acute and infectious on one side, noncommunicable and chronic on the other—no longer hold. New models are needed—based perhaps on a continuum or notions of continuity described here. Whatever the remedies, they will accommodate new technologies, interventions, and pharmaceuticals of the contemporary age in ways that respect the lifeworlds of sufferers.

1 VVVVVVVVVVV The Chronicity of Life, the Acuteness of Diagnosis C A RO LY N SM I T H -MO R R I S

The biotechnological

marketplace shapes much of the discourse on the

chronic–acute dichotomy, and ultimately has a significant effect on the foci

of medical anthropologists. By distinguishing a condition that is curable and therefore acute (as in broken bones and many bacterial infections) from disease that is incurable and therefore chronic (as in heart disease and diabetes), we leave in place biomedicine’s self-referential system of disease classification (Taussig 1980). Any unquestioned use of this system has the potential of colonizing the lifeworlds of our informants and ignoring (or missing) the lifelong balance of health that they maintain. If, as I will discuss, chronicity is no longer defined by the natural course of disease (e.g., the “slow killers”) but by the availability of biotechnical strategies to address them, then the chronicity of an illness experience is not a medical fact but a technological, political, and economic one. In the contemporary global economy and diaspora, where some infectious diseases produce lifelong cycles of suffering, where the mortal effects of previously deadly disease are averted through new treatments, and where longer lives give rise to new forms of “wear and tear” on the human organism—in short, where chronic suffering is increasingly mundane and invisible—the hegemonic force of the chronic designation loses much of its power. To explore these forces, I turn to a condition for which the lived experience tends to differ markedly from what biomedical tests might reveal: diabetes. The human experience of disease is driven by symptom and experience, and these are both culturally influenced. Lifelong, culturally influenced characteristics of susceptibility, identity, and constitution have little place in the temporal diagnostic categories of biomedicine’s chronic diseases like diabetes. Using ethnographic work among Gila River Indian Community Pima (Akimel O’odham) Indians, spanning two projects over ten years, I propose a view onto the chronicity of life and the acuteness of medical diagnoses that link the pre-, mid-,




and post-disease (i.e., lifelong) states, and offer a more holistic, defragmented approach to health.

The Temporality of Biomedicine The chronic–acute dichotomy is fundamentally a temporal marker. Consistent with its Greek etymological roots, the chronic condition is one “marked by long duration or frequent recurrence; not acute” (Webster’s Online Dictionary). But time is not a neutral concept within biomedicine; it is instead a very powerful factor that is used in the diagnosis, treatment, and labeling of illness (Foucault 1973; Frankenberg 1986, 1995). Time was one of the many conceptual transformations of the eighteenth century. For diagnosticians, time became the unifying structure in predictable, “reproducible” disease processes, as Foucault wrote: “[T]ime was not an unforeseen element that might conceal, and which must be dominated by anticipatory knowledge, but a dimension to be integrated, since it introduces the elements of the series into its own course as so many degrees of certainty. Through the introduction of probabilistic thought, medicine entirely renewed the perceptual values of its domain” (Foucault 1973: 97). Time not only acquired greater precision and importance in the industrializing world, but moved into the authoritative domain of the physician. In using time to establish a diagnosis, the physician imbued his estimates and prognostications with “so many degrees of certainty.” Medical temporalities would be especially influential for diagnosis in the old of age, whose time is assumed to be short and properly devoted to preparation for death (Sankar 1984), or for those who face a life-threatening or disabling condition (Good and Delvecchio Good 1994; Mattingly 1998). “Time is precious, it is short, not to be wasted, experienced with impatience” (Good 1994: 126). Diagnosis of disease essentially robs a person of “their time” (Gordon 1990: 288–289), so health education to reduce severe morbidity and mortality attempts to reduce the time between onset of symptoms and presentation for care. Within this authoritative scheme, diagnostic activities determine the form of disease and its label. Temporal factors in diagnosing, such as the length of symptoms or the number of episodes in a given time frame, help diagnosticians decipher fundamental patterns in the disease process. As Foucault’s analysis suggested, the physician’s concern is to know the “natural course of disease”; s/he must interrupt the natural course in order to treat the patient (Foucault 1972, 1973). In this paradigm, biomedical diagnosis is actually clouded by the need to interrupt the disease process before its “natural” conclusion; diagnosis is defined and determined by that temporal moment. Many anthropologists chafe under definitional rubrics that reify biomedicine’s authority to define the health experience, but temporal rubrics tend to escape notice (Ron Frankenberg’s work being an important exception).



Authors in this volume repeatedly challenge the chronic–acute dichotomy as overdetermined and, in my argument, reliant upon temporal factors that are now transformed by contemporary treatments. Examples of the new labeling dilemma include the many years of extended life granted by retroviral therapy for persons with HIV, the identity-altering effects of gastric bypass surgery for obesity, or the episodic experience of many permanent diagnoses. What of the lifelong identity of illness carried by Pima Indians who might never receive a physician’s diagnosis of diabetes? And alternatively, how do modern biotechnologies create chronic conditions, or chronic identities, where they did not exist before? The cost of an uncritical use of biomedicine’s temporality is rising. Consider, for example, the temporal distinctions between chronic and acute disease have set the discourse and direction of most global health campaigns for decades. By distinguishing a categorical difference between the acute, infectious diseases of “the third phase” and the chronic conditions to which mortality in industrialized nations are now largely attributed (in “the fourth phase”), a powerful conceptual dichotomy was created (Omran, 1971). This chapter contributes to a challenge of that dichotomy, based on the premise that endemic disease in the modern context is often viewed as the result of structural violence more so than the failures of individual sufferers. Whole communities share diagnoses, or significant risk for certain diagnoses, particularly in the development context (consider here chapters in this volume by Kendall and Zelee, and by Wiedman). The experience of some developing communities in both resource-poor and resource-rich settings toward not just epidemic but endemic rates of these chronic conditions is evidence of the failing dichotomy. The temporal, chronic–acute distinction no longer explains disease in terms that are meaningful when new technologies and treatments fully manage the symptoms and effects of diabetes or HIV infection, and while some sufferers experience lifelong symptoms or stigma associated with trauma, violence, or infection. In addition, the chronic–acute dichotomy for diagnosis certainly fails to address any of the proximal causes beyond the individual human organism. An evolution toward endemicity that occurs in some developing communities (Smith-Morris 2006a) is a principal symptom of capitalism’s violence, by which the global masses who could be brought closer to industrial technologies, commodities, and resources are instead restricted in their access and culturally limited in their use of them. For example, doubling or tripling the healthcare funding necessary—at a cost of $13,243 per patient per year according to MSDSP (2004)—if funneled through the same biomedico-centric structures and programs, will not stem the progression from epidemic to endemicity. In these ways, overreliance on a biomedical paradigm actually contributes to longer and greater morbidity around the world by encouraging what could be called a passive discourse of chronicity in developed nations.



Life’s Chronicity: A Continuum of Disruption While the meaning of chronicity and the impact of this discourse on global health priorities have captured the attention of medical anthropologists, these are not the concern of sufferers. What sufferers have complained about are the proximal reverberations to their life produced by this biomedico-centric paradigm, such as the high cost of lifelong medications, culturally inappropriate or economically unfeasible healthcare solutions, lack of access to care, or support for survivors of traumatic accidents. The passive discourse of chronicity is one that largely accepts the high prevalence of chronic diagnoses because individualistic models have failed to produce a cure. At Gila River, the National Institutes of Health has spent billions researching diabetes but has not produced what would be considered by local standards a cure and was recently ejected from the community. There is now a habitual orientation in international development and health programming toward medicines and technological treatments that may prolong the quantity but not the quality of life (Lynn et al. 1997; Zimbelman 1994). A critique of this trend acknowledges the benefits of biomedical interventions, but points to the invisibility of the primary and comprehensive healthcare needs of sufferers. When monetary and political focus is on “the international spread of [infectious] disease” and “outbreaks” that cross borders (WHO 2007b: 8), there is little room for research on the more mundane suffering of the “chronically ill.” The passive discourse continues to hold victims responsible for their suffering, ignores structural factors replicating poor health patterns, and focuses monies on individualized prevention and education activities. Notably, as marginalized groups gain the collective strength and resources to achieve an audible voice, they have many times refused to participate in “prevention” activities that run contrary to their cultural values and priorities (e.g., Balshem 1993; Chand and Bhattacharyya 1994; Frank 1996b; Ramirez et al. 1995). Now that the chronic experience has become so diverse, there is an opportunity to redefine these categories. The dominant response within medical anthropology to the variability of chronic experiences has been to focus on the narrated experience and identity of sufferers as they cope—chronic disease became chronicity. Sue Estroff (1981, 1995) was the first to suggest the inadequacy of a chronic–acute dichotomy. Her analysis focused not so much on the inherent problems in the dichotomy’s meaning as on the assessment of identity “disruption” caused by various chronic diseases. “The Problem of Chronicity” expanded our notion of chronic disease from one that was biomedically defined to one defined more by the identity of the sufferer: Chronicity consists of a fusion of identity with diagnosis, a transformation of self to self and with others . . . a constriction of social roles and identities to a core of patienthood and disablement, and an engulfment,



loss, and often unauthorized but nonetheless demoralizing change of self from a person who has an illness to someone who is an illness or diagnosis. (Estroff 1995: 251)

In this “I Have vs. I Am” illness rubric, she began the work of questioning biomedical disease categories with this more person-centered perspective (Estroff 1981, 1995). Chronicity was no longer just about the top three causes of death that are chronic, noninfectious diseases (e.g., heart disease, cancers, and stroke). Rather, chronicity is a process through which almost any patient may pass, regardless of the diagnostic label they carry. It is the process of identification with one’s disease—the movement from having a disease to being a person inhabited by that disease. Identity work and reacting to “disruption” subsequently took center stage in much of recent anthropological works on chronic conditions (Becker 1994, ; Frank 2000; Kaufman 1988a, 1988b, 1994). The goal of the sufferer is reintegration, but the return to continuity comes not from the change (e.g., in rehabilitation or in healing) but from the inner work of identity transformation. In these discussions involving medical anthropologists and other professionals engaged in similar projects (e.g., Frank 2000; Good 1985; Mattingly 1994, 1998), the principal work of the patient is to conceptualize, emplot oneself into and/or adopt a new internal and social identity that better fits with the new bodily state(s). From this perspective, healing comes not from the biological cure, or even from therapy per se, but from identity change and restabilization in response to each disruption. Students in my recent graduate seminar on chronicity asked, “How much disruption is disruptive enough?” In other words, how much and what kinds of disruption would be enough to force the identity change that Estroff had envisioned? Could we not conceptualize disruptions on a continuum, some requiring tremendous identity shift and others very little? Certainly, the life circumstances, culture, and socioeconomic context of each sufferer would also influence the severity of disruption. Pushed to its pedagogical limits, this continuum of disruption could encompass all of life. Life is a series of disruptions, small and large, to which we eventually either adjust or succumb. Therefore, identity is constantly in flux. The decision to adjust or succumb is innately and emphatically answered by our survival instinct. But it is a good question for those who ponder the gaze of medical anthropology. To what disruptions do we give our attention, and which do we leave unaddressed and unchallenged? Rene Dubos ponders these questions in Mirage of Health (1959) in which he explores the struggle inherent to human experience, the constant search for utiopian ideals of health and a social order “free of the defects and vices found in all actual societies (1959: 259). Those who would design these utopias—the Greeks, ancient Chinese Taoists, and any of Plato’s or the contemporary era’s physicians—soon make judgments about the ideal human they hope to create and there is considerable diversity in these judgments over time and across



societies. One wo/man’s state of health is another’s chronic condition. What’s more, for all of our “progress”, we cannot overcome the urge to put ourselves in various states of risk, under stress, or to move away from the homeostasis we have just accomplished: The kind of health that men desire most is not necessarily a state in which they experience physical vigor and a sense of well-being, not even one giving them a long life. It is, instead, the condition best suited to reach goals that each individual formulates for himself . . . urges which are social rather than biological (1959: 278–279).

Dubos’ mirage and Estroff’s disruptions each suggest a continuum of health rather than the categorical binary. , Were the temporality of disease conceptualized as a continuum, rather than through a chronic–acute dichotomy, might we better address bodily experiences of disease as related to one another across a life span? Such a conceptualization might incorporate not just those conditions that are biomedically defined, but also the lived conditions that both characterize and punctuate life, such as notions of stress, strong or weak constitutions, and formative or traumatic life events. Such a conceptualization could encompass these messy and fluctuating variables as they map social and societal circumstances onto the body.

A Diseased Life? Challenging Diagnostic Hegemonies Diabetes is per force a disruptive condition. Its various diagnostic categories occupy several positions on the continuum of disruption. But while it is recognized widely as a chronic disease, diabetes also brags a host of medications and treatments (e.g., biguanides that decrease glucose production; thiazolidinediones that improve target cell receptivity to insulin) that camouflage the “natural” temporality of this disease. That is, they prolong life, delay symptoms, and even extend the disease label through the biotechnological windows of presymptomatic screening. I turn now to diabetes and case data from two projects spanning ten years as evidence of the weakening of the chronic–acute dichotomy. Diabetes is a disease process that can, at different temporal locations and by different speakers, be called a “risk,” “pre-disease,” “gestational,” “outright,” or fatal, but never “in remission” or “cured.” Diabetes has three major diagnostic types within biomedicine: type 1, which results from the body’s failure to produce any insulin; type 2, resulting from insulin resistance (the improper use by the body of insulin) plus a relative insulin deficiency; and gestational diabetes, affecting about 4 percent of U.S. women in pregnancy (of whom about two to three go on to develop type 2 diabetes later in life). However, many subtypes of diabetes also exist, as does the concept of prediabetes, in which blood glucose levels are higher than normal but not enough for a diagnosis of type 2 diabetes. These many types of diabetes, and the diagnostic controversies that exist over



their distinctions (Smith-Morris 2005), offer a good illustration of the biomedical temporalities that are hegemonic within the chronic–acute dichotomy. The American Diabetes Association (ADA) sets the thresholds for diabetes in ways that will capture those at greatest risk for later complications. That is, a diagnosis of diabetes is not so much a measurement of current problems as it is a statistically determined threshold for predicting future complications and outcomes. Screening tests to identify disease before any bodily symptoms are present offer an important advantage in biomedicine and public health. However, where such tests exist, patient experience at the moment of diagnosis will not likely match their impressions of disease. Because of the importance of this diagnostic cutoff for prevention work, and because diagnostic decisions are constantly updated with new epidemiological and clinical information, the boundary line between diabetic and nondiabetic is frequently debated in the clinical literature. So for many reasons that are both lay and professional, diabetes is a controversial and contested diagnosis (Smith-Morris 2005). There is an epidemic of diabetes within the Pima community of Gila River in Southern Arizona, where half of adults over age thirty-five have been diagnosed with the disease. Because this epidemic is rooted in both historic events and prehistoric genetic developments, the Pimas I have known and interviewed (n = 180 from two projects in 1997–2001 and 2004–2006, plus participant observation from a total of almost three years living in the community) have had a long time to identify with this disease. They describe diabetes as not simply an individual disease that individuals must fight to control or prevent, but as a community disease that all Pimas understand and adjust to throughout their lives. All Pimas are familiar with their community’s diabetes fame, and from this comes the perception, “it’s just how Pimas are” (Smith-Morris 2006b). Gestational Diabetes Mellitus (GDM) is the temporary form of diabetes that occurs during pregnancy. Unlike type 2 diabetes, which is a medical label that is never removed regardless of subsequent glucose control, the label of GDM is removed after the birth of the child and, should high glucose levels continue, a new diagnosis of diabetes is required. This occurs despite the fact that it leaves both mother and child worse off than their non-GDM counterparts. Much of my work has focused on diabetes among women, because women have more opportunities for diabetes-related disruptions in their lives. Between 5.2 percent and 9.7 percent of Pima pregnancies are diabetic pregnancies, and 50 percent of women who develop GDM go on to acquire diabetes within twelve to eighteen years (Livingston et al. 1993; Pettitt et al. 1996). Further, diabetes and GDM are complicating factors in pregnancy and childbirth due to fetal stress, high birth weight, and necessitated cesarean-section deliveries (Freinkel 1980). Infants born to mothers with GDM or diabetes are more likely to be insulin resistant and therefore more likely to develop type 2 diabetes themselves (Fackelmann 1990). Diabetes during pregnancy becomes a red flag not only for the mother’s future health but for the health of her fetus and future children. Women,



including teenage girls, are therefore disproportionately targeted for prevention education and monitoring. Primary prevention of this disease (in the infant) and secondary prevention of this disease (in the mother) can occur through a single patient (Murphy et al. 1994). However, GDM is asymptomatic. So women must understand the concepts of risk and preventive glucose monitoring in order to find preventive action beneficial (Gifford 1986; Hoffman-Goetz et al. 1998; Kavanagh and Broom 1998). The few symptoms that might be present can easily be confused with symptoms related to pregnancy or life in Arizona temperatures (for example, fatigue, excessive thirst, and swelling in lower extremities). The identity work necessary to adjust to the disruptions of diabetes is not only great, but varies in character and quantity throughout one’s lifetime. Pregnant Pima women experience particular confusion over diagnostic testing for diabetes since gestational diabetes is unique among the many forms of this disease. These women share stories of fluctuating test results with family and friends, ultimately contributing to a community-wide perception that diagnostic tests can be wrong, or that a positive test one day might be negative next time. Challenges to a diabetes diagnosis can take several forms. Some Pimas resist a diagnosis by refusing to be tested; others resist biomedical monitoring and labeling altogether by refusing to consider their body diseased or their life experiences chronic. To these Pima, the very activities that help prevent or manage diabetes are seen to be colluding with dominant powers. Certain behaviors related to good diabetes prevention and management are “white wanna-be” or not traditional. Other assumptions of biomedicine rejected by many at Gila River include statistical notions of risk, the intransigence of the diabetes diagnosis regardless of glucose control, and the individual nature of the disease (Smith-Morris 2006a). For the Pima, a chronic disease label of diabetes is tied to a specific history and political experience. This history is one of colonization, loss of Gila River water to upstream whites, the demise of farming as a way of life, and subsequent dependence on government commodities and supervision. These historic and political events produced an epidemic of diabetes by the 1940s, and current prevalence of roughly half the adult population. So for them, diabetes is not just a biomedical diagnosis, but part of what many Pimas view as a lifelong diseased identity: Pimas have, you know, have a real high risk [for diabetes] . . . higher than anybody else. I don’t know how to put it, it’s just how Pimas are (Sara, 36). Why do you think Pimas have so much diabetes? I’d say it’s from the salt and sugar and overeating. I believe that it was from way back when we lost our river and a lot of people started stressing out and all they did was eat and that’s how they started getting diabetes (Betty, 30).



The community has begun to resist this oppressive history by reclaiming Pima identity in healthier ways, most notably, its recent expulsion of the National Institutes of Health clinic and research program. To accept the diseased identity is to not live well, to not be “Indian,” or to conjure or bring on sickness, as these varied responses to the question “Why do you think some Pimas don’t like going to the doctor?” suggest: Some people say, “well, we didn’t need that” . . . you know, a long time ago. And that’s their way (Deborah, 32). If you go to the doctor, you know, you get sick more. Because I guess you’d find out what’s wrong and they try to treat it and all that. To her it was like she didn’t want to do that. She didn’t want to go to the hospital and she didn’t want to have to do none of that (Fay, 46). I think some of the older people are scared . . . they have their own beliefs and stuff like that. There’s a lot of them that’s why they don’t go see the doctor because they feel that medicine, you know, won’t really work for them. They just rather do it their own way or the old way, whatever (Denise, 32).

Biomedicine is the newcomer to this community, and some Pimas, particularly the elders, maintain that the new medicines “won’t really work for them.” For others, the fear of a diabetes diagnosis, or fear of its stigma, and/or fear of its implications, are enough to keep them away: I don’t know, it’s probably they’re scared and maybe they’re I think that it’s just that they’re scared to hear you know what’s wrong with them. . . . I think it’s just the thought of hearing it. That’s why, I think that’s what most people think. And that’s why they don’t go to the hospital (Dorothy, 32). Scared of what they’ll hear, I guess (Olivia, 22). I guess just to them it’s no big deal. They don’t realize. If you hear Indians a lot of the time, they [think they] have iron stomachs and they can get through anything. That’s kind of how a lot of them think. And I think that’s probably why a lot of them, they just don’t want to go and bother with it (Francine, 60).

These Pimas challenge the lifelong diseased identity that diabetes has brought to their community. These challenges occur in Pimas’ personal strategies—which include everything from embracing biomedical prevention strategies to rejecting all talk of diabetes in their lives—and through communal strategies—such as the expulsion of the National Institutes of Health and the tribal turn toward community-based health programming. At Gila River, the chronic–acute dichotomy helped perpetuate a crisis-oriented approach to health care, and so a wait-until-diagnosis attitude toward the ravages of diabetes. These



approaches and attitudes are now the principal targets. Symptomatology and glucose readings, the acute evidence of diabetes, are increasingly downplayed at the community level in favor of the lifelong experience of fluctuating wellness experienced by all Pimas. Pimas challenge these disease identities in ways that contribute to a critique of the chronic–acute dichotomy.

Screening Tests and Diagnostic “Bleed” How does one get from these acute experiences of diabetes to a chronic diseased identity? Screening tests create the window to symptomless or presymptomatic disease, and can also gaze forward to a post-disease or remission state, during which symptoms are under medical control but risk surveillance continues. In the case of breast cancer, for example, removal of cysts that may have been precancerous yields a breast without such threatening cysts, but the patient must continue to undergo monitoring for future cyst development and, often, repeat surgeries (Gifford 1986). When the boundary between a healthy-but-atrisk and diseased state become blurred, as Gifford (1986) argued, patients can consider fibrocystic breast disease and breast cancer to be different forms of the same disease. Through their pre- and post-disease windows, screening tests expand the purview of biomedical knowledge and authority. They draw territorial lines in our lives to divide time into meaningful categories—be they diagnoses or undiagnosed. For many who become indoctrinated into this diagnostic dichotomy, preventive screening is confused with disease onset itself. Thus, nondiabetic Pimas who are, by virtue of their ethnicity, at high risk for diabetes, already have a diseased identity. Kavanagh and Broom describe a process whereby risk is “activated” through the process of screening and diagnosis (Kavanagh and Broom 1998: 440). Their research with women undergoing Pap smears to screen for cervical cancer revealed that many women reacted to a cervical abnormality “as if they had no risk previously.” So when the purview of biomedicine is expanded by our greater understanding of risk, so too is the experience of the disease itself—turning precancerous stages into experiences of cancer. For diabetes, screening for its gestational form helps predict complications in pregnancy, as well as the likelihood of diabetes later in life. There are at least two conceptual events that should occur alongside the diagnostic screening. First, an early diagnosis is not helpful unless the woman appreciates, or “buys into,” the concept of biomedical risk. She must not only understand risk information itself but also its implications. For the screening to be useful, she must acknowledge that her behaviors, genetics, and environment will affect the ultimate outcome. Second, an avoidance response to diabetes must also exist. If she considers diabetes as either utterly unavoidable or for some other reason not worth the prevention effort, she may not be interested



in risk information or may not understand that interventions may prevent the disease. In the case of diabetes and pregnancy, patients might easily consider gestational diabetes and non-insulin-dependent diabetes mellitus (NIDDM) to be entirely different problems. Treatment of the pre-disease condition can lead some patients into a false sense of security that all danger is past. Expanding biomedicine’s purview and sight, therefore, has both positive and negative potential. Screening data on a population level are central to public health interventions, and a critical part of diabetes prevention at Gila River because of its epidemic proportion. What the Gila River Indian Community hopes to avoid is the use of risk data in ways that create “dependent, docile bodies, divert[ing] attention away from structural changes and instead focus[ing] on changing those deemed to be in need” Gifford (1992: 13). In the implementation of public health initiatives, risk data can promote action where “there is no knowledge of any actual victims” (Sapolsky 1990: 86) to justify the administrative and funding allocation decisions of the state (Stone 1989), and to suit a wide variety of interests (Gifford 1986: 17). In sum, risk factors in public health are only “the surface causes, the current intervening mechanisms” (Williams et al. 1994). Thus, although risk data are essential to prevention, talk of population risk can simultaneously divert attention from the more widely influential structural factors in disease. The public health narrative tends to talk of diabetes as a population-level risk, but an individual-level prevention project. At Gila River, the population-level conversation addresses Pima risk as an ethnic and genetic group, drawing attention to the long-term adjustments necessary for preventing or treating diabetes. Thus, the chronic–acute dichotomy forces our attention to symptomatology rather than to etiology (social, economic, political, or biological), and therefore decontextualizes our subjects.

Demarcations The many diagnostic forms of diabetes return us to the concept of a continuum and fluidity of movement in health, especially over a lifetime. The conceptual distinction of prediabetes from the various types of “outright” diabetes is inherently difficult because the human organism naturally moves around on the continuum of blood glucose control. Although biomedical diagnosis requires boundaries to be set that demarcate disease category, “[w]hether or not a particular behavior or experience is viewed by members of a society as a sign or symptom of illness depends on cultural values, social norms, and culturally shared rules of interpretation” (Mishler 1981: 141). Symptoms cannot always be differentiated from each other, and the testing procedure—particularly for gestational diabetes—is particularly confusing. Given these ambiguities about symptoms and tests, it is reasonable to expect that illness identities can be equally amorphous:



Okay, you know, you do these two hours [of testing], you do the one hour, you do a three hour (Testa et al. 2003). Okay, your sugars are up and then it’s like, “okay now I’m classified GCI. . . .” And then they do them again six months later. And I’m classified gestational diabetes. I’m like, “wait a minute,” you know? So what comes next? It’s just, basically, that’s all I have to say is what comes next? . . . That just blows my mind (Kelly, 34).

Nichter’s consideration of risk accentuated these subjective and subjunctive forms of vulnerability. Ambiguity allows illness to be viewed as “cumulative or transformative, that is, that one’s own existing vulnerabilities or latent illness could become a serious illness if one did not protect himself from further risk” (Nichter 1998: 5). Experience, personal intuition, and hunches about the likelihood of developing disease in a given context, time, and circumstance also contribute to individual feelings of vulnerability. Comparative risks and optimism factor in (Van der Pligt 1998), as do a person’s emotional states (e.g., Hammer 1995 on fear). There are also culturally determined periods of vulnerability such as menstruation, the days following a kill in battle, or when one is thrust into alternating hot and cold spaces (Frazer 1922). Each of these is specific to a type of person in a prescribed place, time, or circumstance. The phenomenological screening of bodily sensation is culturally mediated and elusive through somatic modes of attention (Csordas 1993). And people will have a sense of, or periods of, resiliency during which they may engage in risky behaviors with relative safety. These states of resiliency may be random or they may be controlled through behaviors, foods, after-the-fact harm reduction efforts, etc. Anthropological attention to the identity work of sufferers is, perhaps, most relevant to the larger critique of the chronic–acute dichotomy, and is the singlemost important factor in this discussion of Pima diabetes. The lived nature of illness—particularly for the long-term or lifelong state of diabetes risk in which all Pimas exist —is central to a sufferer’s identity. At Gila River, the politics and history that preceded the very first cases of diabetes contribute to a health identity infused with political resistance. Pima resistance is visible in individual reactions to treatment and prevention, but is more apparent in communitywide and even pan-tribal conflicts with the biomedical approach to healing. Several specific Native American health beliefs illustrate the politics of diseased Native identities. Some Native Americans may hold beliefs related to the “awakening” or “activation” of disease through physician intervention or probing (Hoffman-Goetz et al. 1998; Kavanagh and Broom 1998: 440). David Kozak (1997), an anthropologist studying the health attitudes toward and perceptions of NIDDM on the Gila River Indian Reservation, suggests “surrender” to be the embodied emotional response of most Pima. “Surrender” is an emotion identified by Kozak; he argues that diabetes and its complications have, over a long period of high prevalence in this community, led to “changes in . . . individual and collective response to [the] disease” (Kozak 1997: 348). In identifying an



emotion that is shared throughout a community, but “individually expressed and communicated,” Kozak’s study is reminiscent of Lang’s (1989) look into how a community’s cultural and historical identity is indexed through illness narratives and “commentaries.” Kozak suggests the political economic factors that may have contributed to the development of the surrender emotion in this community when he reports that 70 percent of his participants were unemployed at the time of their interview, as well as when he refers to the “active creation of economic dependency, largely through the diversion of Gila River water” (Kozak 1997: 356). Local interpretations of risk information are especially important in communities with endemic disease and long-standing prevention programs. For example, a low-risk pregnancy among the Pima is an increasingly rare occurrence. The rise in diabetes prevalence coupled with a falling age of initial diagnosis place young Pima women closer in years to a diagnosis of diabetes, even before GDM is factored in. Given the high rates of GDM and diabetes, Pima women’s strategies for avoiding risk or for reducing the harm produced by this disease will be critical to an ultimate turn in disease rates (Smith-Morris 2006a). In cultures undergoing rapid economic, cultural, and political change, the cultural traits that contribute to the formation of ideals and values may be shifting. The following narrative from a Pima man illustrates the complicated cultural and political perspective that informs his sense of identity: All my grandparents . . . Just looking at it now as an educator I think, damn, they were crying out for help back then. Even then, if you’re taken away from somebody when you’re eight to twelve years old . . . and they have to speak this, and then losing what our environment, what our people rely on the land so much, our belief system. They’re just taken out of it, and taking it from them, to no riverside and not being raised in our own way and how to survive in our environment. . . . My theory is that we lost all of that. And all of a sudden you come back, you put them back in, and it’s a stressful subject because if you have kids and most of them getting pregnant they came back with kids. Well, how do they know how to raise them O’Odham if they’re not here to be O’Odham. You can’t be O’Odham in California. You can’t be O’Odham in San Diego. O’Odham is being here (Miguel, 31).

This man’s lifelong identity as Pima contributes in specific ways to his sense of susceptibility and resilience. Some states of susceptibility are already clearly medicalized, such as immune disorders, the state of being high risk (e.g., all Pimas are at high risk for diabetes), and personalities that can be diagnosed as disordered (i.e., personality disorders). Still other states of susceptibility are only partially medicalized, because biomedical hegemony has not been established over them: hair loss, homelessness, or variations in libido or sexual function



(e.g., Conrad and Leiter, 2004). Peter Conrad and Valerie Leiter, “Medicalization, Markets and Consumers”. Journal of Health and Social Behavior 45: 158-176.). But the states of susceptibility that best challenge contemporary notions of the chronic–acute dichotomy are those lifelong conditions that, while remaining well outside the purview of biomedical diagnosis, are still influential in a person’s sense of vulnerability to disease. Pima diabetes is one such condition. In short, the life span—while conceptualized in the norm as a relatively long health decline punctuated by diagnostic events—might be better conceived as a perpetual state of multidimensional (fluctuating) but continuous balance.

Defragmenting the Life Span Cultural change is not understood as unfolding according to some predetermined logic (of development, modernization, or capitalism) but as the disrupted, contradictory, and differential outcomes which involve changes in identity, relations of struggle and dependence, including the experience of reality. Anthropologists have long claimed that ethnography can challenge hegemonic categories, symbolizing and structuring our reality of illness and wellness. Ong’s ethnography of Malaysian women’s illness in their factory jobs does just this, destabilizing concepts of illness through a critique of the power structures in which illness occurs and are made meaningful. Others of us have talked about the moment of diagnosis as an acute disruption in an otherwise roughly flowing stream of life (Frank 2000; Ohnuki-Tierney 1986). Beyond these critiques, the process of diagnosis contributes to the fragmentation of human experience through its emphasis on liminality and distinct temporal units. Building on the trope first suggested by Van Gennep and later elaborated by Turner (1969/1995), I think we have not only overused the concept of liminality, we have used it to colonize new conceptual territories. The “disrupted” portions of life appear to us through ethnographic research, so we draw attention to these “liminal” elements of illness. Critical medical anthropologists must be careful to reemphasize and sometimes recenter the connecting sinews between diagnosed and undiagnosed periods of life.Medical anthropology can produce a more holistic discourse about lifelong health. Indeed, our revision work might begin with our classic theories of disease and healing elaborated in the 1970s and 1980s (e.g., Kleinman, Eisenberg and Good 1978; Frankenberg 1980; Young 1982). Hahn’s (19??) emphasis on suffering, and Kleinman’s later discussions of the same concept, initiated but did not complete an holistic reconceptualization of health as a punctuated but inherently integrated, lifelong experience. The lifelong identity work of infertile Egyptian women, who attribute their highly stigmatized infertility to causes from humidity to sorcery (Inhorn 1994), might be described as a punctuated chronicity rather than acute diagnoses. Mattingly’s productive and transforming narratives are a powerful tool in the de-fragmented life (). McLean argued too, that a careful and engaged hearing of



patients (or informants) would actually minimize their disability, transforming a disease state of cognitive impairment into an altered, but still engaged part of the life cycle (2007). Finally, this chapter on Pima diabetes suggests that a deprivileging of acute diagnostic moments, and a sensitivity to the chronicities of daily adjustment, better reflects the lifeworld of Pimas experiencing this epidemic. Defragmenting our own ethnographic language will help defragment our Cartesian view of the body, destabilize the dichotomies that reify biomedical strategies and treatments, and ultimately alter the targets for intervention and our definitions of success. Continuity is not an illusion, as Becker (1994) exhorts; the illusion is in our labeling of lifetime illness episodes as distinct from an otherwise disease-free life. The defining of identity based upon singular categories is itself disruptive. Medical anthropology embraces the continuity of lives through its ethnographic focus; our academic and theoretical language must likewise turn away from the seductive and hegemonic fragmenting idioms of biomedicine. Many of our informants experience a continuous life: “I’ve been living wrong for so long that I think that it’s not wrong. It’s only me. Other people may see it, but not me” (Kyle, 29). Anthropological discourse that defragments will privilege continuity of illness and health together in lived experience, especially as these inform the identity of persons with chronic diagnosable conditions. We raise this concern with the overuse of the term chronic and the diseased identities that chronic conditions so often foster not only for their epistemological and symbolic interest, but because the chronic–acute dichotomy indexes healthcare resources. Recent international discourses have framed the experience of developing communities or nations in the familiar terms of epidemiological transition to chronic disease seen in industrialized nations. The World Health Organization’s (2007e) annual World Health Report 2007 is dedicated to health threats from infectious disease epidemics and other acute health events as defined by the International Health Regulations (de Bode 2005) on the prevention of disease spread across national borders. Yet despite their high prevalence, chronic diseases are not the “rock star” topics that more commonly attract public and policy responses. Could a blurring of the boundary between chronic and acute help expose the structural causes of suffering that oppress throughout a lifetime but that are invisible during the brief medical diagnostic encounter? Gila River Pimas challenge their diagnoses by refusing to hear them or avoiding the screening tests, but also by grappling with their diseased identity irrelevant of their diagnostic status. Miguel, whom I quoted earlier, has not been diagnosed with diabetes but echoes the identity politics of many Pimas, who view diabetes as symbolic of their colonial oppression and history, plaguing them even still. So when Gay Becker discussed the disruptive “events [that] occur continuously” over a lifetime (Becker 1999: 16), she broke ground on what could become a counterhegemonic discourse on the chronicity of life and the acuteness of diagnostic



episodes. Continuity is not just an ideal toward which humans strive as they respond to life’s continuous disruptions, but a normal element in the lives of humans. Continuity underlies whatever diagnostic or interpretive disruptions may occur. The need to carve out symptomatology and disease from the more fluid human state exists. So this fluidity should not be ignored or eliminated from our interpretive and diagnostic categories.

Conclusion Ethnographers and social scientists interested in the lived experiences of illness do not always ignore the lifelong balance of health maintained by their informants. The chronicity of healthy and ill periods across a life span can produce a variety of experiences for sufferers—including both continuity and disjointed feelings. Diagnostic screenings that reveal to us the pre-, mid-, and post-disease states emphasize and privilege the feelings of disjuncture. We need not adopt or maintain the passive discourse of chronicity that privileges a fragmented, disjointed view of life’s experiences. Now that the chronic experience reveals itself in such diverse illness experiences, we have an opportunity to change our use of the chronic–acute dichotomy. Medical anthropologists and other social scientists of health have already begun the work of defragmenting the life span in several ways. First, we have reduced our use of fragmenting discourse (e.g., liminalities or stages) in favor of a flexible and continuous identity that moves around through a variety of illness experiences. Second, we help destabilize dichotomous variables like chronic–acute by not using them, or by addressing their failures of meaning in the contemporary context. Third, a bold few medical anthropologists are creating a counter-doxic language of balance, multiple states of health, or health as successful coping. Fourth, we can encourage and support extrabiomedical interventions in our applied work that address community health and identity. Physician-created models of patient empowerment encourage relinquishing strict clinical goals in favor of a more balanced life and goals that patients can realistically reach (Moynihan and Smith 2002). Fifth, our work engages more now with city planners, politicians, schools, and neighborhoods (and less with medical schools and clinics) so that structural causes are recentered and individual ones de-emphasized. And finally, ethnographic findings are increasingly present in public settings, not just academic and clinical journals, so that a broader sensitivity and awareness develops, fostering not just academic but public attention on the structural causes of disease. The label of “chronic” is no longer a meaningful distinction for the list of long-term and lifelong conditions that we now experience. Were the label simply referential of temporal aspects, this discussion might not be necessary. But as the Pima and other communities described in this volume remind us, disease labels carry stigmatizing effects and political-economic influence in the



contemporary world. Chronicity’s effectiveness as a temporal reference is more clearly seen as a reference to our biotechnological ability to treat or manage a condition, and society’s norms surrounding the experiences that illness produces. Using these references, then, contributes to meaning systems in which biomedicine is central and hegemonically unquestioned while the experiences that contradict this institution and its mechanisms are made silent. Instead, ethnography can reveal the chronicity of life, and the acuteness of diagnosis, as these things are experienced by individual sufferers and local communities over time. As we formulate broader and more effective ways of speaking of these experiences, a defragmented life span can be conceptualized.

2 VVVVVVVVVVV Globalizing the Chronicities of Modernity Diabetes and the Metabolic Syndrome D E NN I S W I E DM A N

For most of human history as hunters, gatherers, and agriculturalists, humans maintained an active physical lifestyle that varied with seasonal resources and

promoted cardiovascular and metabolic fitness. But for the past five hundred years, since early European imperialism, there have been major changes in everyday life and, in consequence, in health. Early industrialization and globalization diffused commodities and labor-saving technologies for work and home throughout the world. In recent decades, this process has gained extraordinary momentum: With modernity, large numbers of people now live a life of low physical activity, consistent energy intake from foods, and chronic levels of psychosocial stress. These in turn result in an array of metabolic disorders, including diabetes mellitus and associated chronic conditions. In ancient Greece, diabetes as a disease was associated with the elite managerial class; by the 1970s it was characterized as a “disease of civilization,” affecting mostly lower classes and ethnic minorities. Once blamed on the genetic, mental, and cultural maladaptations of indigenous peoples, ethnic minorities, and inner-city poor, it now affects the full spectrum of social classes and ethnic groups. Thirty years later, diabetes is associated with the metabolic syndrome (MetS), the co-epidemic of obesity and heart and kidney disease that is increasingly prevalent in developed and developing nations. No particular foods, genes, socioeconomic class, ethnicity, or other inequality can consistently explain the initiation of metabolic disorders in modernizing populations worldwide. In this chapter, I develop a theory of chronicity to reconceptualize and explain the global pandemic of MetS, by arguing that its underlying cause is the dramatic shift from “seasonality” of hunters, gatherers, and agriculturalists to the “chronicities of modernity.” This perspective builds upon Susan Estroff’s use of chronicity “to refer to the persistence in time of limitations and suffering that results in disabilities as they are socially and culturally




defined and lived” (Estroff 1993: 250). This theory of chronicity focuses on sociocultural explanations for metabolic disorders, rather than the current genetic and biological explanations that are predominant today. As an embodiment of modernity, the chronic metabolic disorders reflect the physical body’s response to the chronicities of modernity.

Metabolic Syndrome Defined Diabetes mellitus and associated chronic metabolic disorders were relatively unknown prior to modernization, even though the physical characteristics of diabetes were mentioned as early as 1500 BC in Egyptian medical writings and a Greek physician provided the first complete clinical description of diabetes in the second century AD. His patient was the manager of a granary, an elite member of the community (Papaspyros 1964: 4–6). Like our knowledge of most diseases, the biopathological understanding of metabolic disorders began in the mid-nineteenth century. In 1849 Claude Bernard identified glycogen in the human body as similar to the sugar in grapes and found in the urine of those with diabetes. In 1869, the pancreas was associated with the metabolism of carbohydrates. In 1921, the extracted hormone insulin from the pancreas was discovered to lower blood sugar. By 1923 a test was being used to determine blood sugar levels and insulin was being used to treat diabetes. This led to the identification of insulin resistance as type 2 diabetes, and subsequently, in the early 1950s, to the development of oral hypoglycemic medicines (Papaspyros 1964). A significant paradigm shift in the scientific explanation for diabetes followed Kelly West’s comparative study of twelve different nations of the world (West 1978). Finding a consistent association of diabetes with body fat, irrespective of the source of calories, West shifted the theoretical paradigm that diabetes was the result of “sugar consumption” to the most often used explanation today: “obesity” (West 1974a). The clustering of risk factors for obesity, diabetes, dyslipidemia, gall bladder disease, and hypertension has focused researchers on portraying these as metabolic disorders with a common defect. Over the years, these were variously conceptualized as “Insulin Resistance Syndrome,” “Syndrome X” (Reaven 1988), “New World Syndrome” (Weiss et al. 1984), and “Multiple Metabolic Syndrome” (Young et al. 2002). In 1999, the World Health Organization (WHO) reconceptualized the cluster of the disorders as MetS. The International Forum on Diabetes in 2005 defined the core components of MetS as central body obesity plus two of the following: raised blood lipids, hypertension, glucose intolerance, or reduced high-density lipoprotein (HDL) cholesterol (Alberti and Zimmet 2005; Alberti et al. 2006; International Diabetes Federation 2005). This reconceptualization and refinement of MetS as a world health problem and public health priority stimulated a broad array of medical research and national public health initiatives. These included the WHO’s 2007 Declaration



of Diet and Physical Activity (WHO 2007a), which urged national governments to promote healthy diets and regular, adequate physical activity as major factors in the promotion and maintenance of good health throughout the entire life course. The emergence of scientific and public attention to MetS is a recurrent political and economic phenomenon, where little attention is paid to a health issue when it affects the poor, minorities, and underprivileged. However, once it affects the privileged class, actions begin to be taken with enhanced public health funding, biomedical research, and prevention programs. Like Farmer’s (1999) reflections on emerging infectious disease, chronic metabolic diseases have been “discovered” only once they had an impact on those who have economic power. A recent article in the New England Journal of Medicine, “Obesity and Diabetes in the Developing World—A Growing Challenge,” summarizes this emergent perspective: “Diabetes is rapidly emerging as a global healthcare problem that threatens to reach pandemic levels by 2030; the number of people with diabetes worldwide is projected to increase from 171 million in 2000, to 366 million by 2030” (Hossain et al. 2007: 214). In developing countries this increase is from 84 to 228 million (ibid.). Similarly, the world level of hypertension prevalence was estimated to be one billion in 2000, and predicted to rise to 1.56 billion in 2025 (Kearney et al. 2005). Yet from all the research to date, no nation or community anywhere, worldwide, has reported success in leveling or reducing the MetS epidemic.

Modernity as a Critical Juncture for MetS In the late 1960s and early 1970s, researchers began to report that the prevalence of diabetes increased significantly as populations moved from rural to urban locations (1969), migrated from non-Western to Westernized nations, lived at greater levels of acculturation on Pacific islands, or, in the case of indigenous peoples, when confined to reservations and in poor rural communities (Cohen et al. 1972). Maori migrating from Polynesian atolls to urban New Zealand, for example, exhibited diabetes within a few years (Prior 1974). This correlation of diabetes with modernization was epitomized by Prior (1971) as “the price of civilization” (see also Eaton 1977). Data from the United States further illustrate the association of modernization, culture change, and diabetes. Diabetes was unknown prior to 1940 among Oklahoma Native Americans, yet by the 1960s, it had reached epidemic proportions; and prevalence rates continue to rise (West 1974b). To identify the social and cultural factors for the onset of this epidemic, I compiled a 150-year cultural and demographic history of Cherokee living in an eighty square mile area of the Oklahoma Ozarks. Ethnohistoric research methods, including archaeology, ethnography, oral history interviews, kinship, and historic document analysis,



provide details of the critical juncture of modernity among this population living in one location for over 150 years (Wiedman 1979, 1987). The Cherokee had been farmers of corn, beans, and squash for more than three thousand years in the southern Appalachians of Georgia and the Carolinas. After forced removal to Indian Territory and the Ozark Mountains of eastern Oklahoma in the 1830s, they continued to farm and hunt, in a very similar physical environment as the southern Appalachians. The Cherokee who moved into this forested area dispersed their homes and farms throughout the hills and valleys. In the 1890s, a railroad passed thirty miles south of the valley, facilitating the planting and export of cotton by the Cherokee as a cash crop to the world market. Following the U.S. Indian Allotment Act in 1903, each Cherokee individual was deeded 160 acres of land. With population increases and smaller parcels of land for farming, more land was cleared of trees for cultivation and a greater percentage of the desirable river bottom lands were planted with cotton. Each spring more and more soil eroded and filled the rivers. Droughts led to the first farm failures in 1936, and by 1946 no families were able to live by subsistence farming. Purchased by outsiders, farms were consolidated into a few very large cattle ranches. Cherokee then moved to California or along a new gravel road that winded through the valley. In a matter of ten years, house sites and settlement patterns changed dramatically, and scattered homesteads were replaced by concentration residences near the improved road. Cherokee men began to work for cash on the new cattle ranches or logged trees for export. Small stores along the roads carried a wider array of products, and roads facilitated residents’ travel to nearby towns and cities to purchase manufactured products. With the shift to a cash economy, Cherokee were freed from the restraints of the seasonality of the immediate natural resources and could purchase foods and other products obtained from a variety of environments. Horse-drawn wagons and plows were replaced with cars, trucks, and tractors. Adults reduced body energy expenditure as they drove to nearby towns and cities to work in jobs. Reconfigured house floor plans and domestic technological changes significantly reduced both male and female physical activity levels. Cooking and bathrooms, once outside in separate buildings, were moved into the main house. Electric and gas stoves controlled fire, heat, and smoke better, while dramatically expanding cooking methods, especially baking and frying. Electricity allowed for refrigerators that enabled larger amounts and kinds of foods to be stored for longer periods of time. This reduced the need for an exterior smokehouse and root cellar for food storage. With house pipes and faucets, the energy expended in carrying water for cooking and bathing was reduced. Indoor bathrooms with flush toilets further reduced walking to an outhouse. Radios, then televisions, connected people to the national and global news, and to commercials advertising industrially produced foods and other items. One example of the impact of these trends was the change in energy expended to prepare whole ground



cornmeal, which served as the basic food item for thousands of years. Traditionally, women would spend time each morning vigorously pounding corn for that day’s use, to be cooked by fuel and with water, both carried to the cooking area. One cup of cornmeal contains eighty-seven grams of carbohydrates. In contrast, degermed and enriched cornmeal, purchased from a supermarket, contains 114 grams per cup (increased carbohydrates by 25 percent), and, with piped water and electricity or gas for cooking, demands little work in preparation. This summary ethnohistory, reflecting the rapidity of the demographic and cultural transition, portrays the critical juncture of modernity as populations transition from subsistence agriculture to a cash economy, from self-produced foods to store-bought foods, from vigorous household chores to the comforts of household appliances, and from actively walking to riding in cars and trucks (Wiedman 1979, 1987, 1989). Other studies, conducted in diverse settings throughout the world, further document this transition to modernity. Douglas Crews and P. C. Mackeen (1982) reported on the modernizing population of American Samoa, Young (1988) among Native Canadians, Teri Hall and colleagues (1992) with the Navajo, and Sharon Bruce (2000) on the Canadian Métis transition in the 1980s and 1990s. The Pima of Arizona, who have the highest rates of diabetes in the world, underwent this critical juncture in the 1930s and 1940s as their water supply for farming was increasingly restricted for commercial agriculture and urban development (Smith-Morris 2006b). In developing countries too, evidence from population-based surveys of seventy-five communities in thirty-two developing countries demonstrate that those who have undergone Westernization and industrialization, and especially urbanization, are at high risk of diabetes, with a 14 to 20 percent prevalence ( Hossain, Kawar, and El Nahas; 2007). In contrast, where a traditional lifestyle has been preserved, diabetes is rare. China and India provide a contemporary example, at a mass national scale, of rapid transition to a modern lifestyle concurrent with rapid economic development (Prentice 2006; Reddy and Yusaf 1998; Yach et al. 2004). Between 1992 and 2002, overweight and obese Chinese individuals increased from 14.6 percent to 21.8 percent throughout the nation, affecting all gender and age-groups in all geographic areas (Wang et al. 2007). Between 1993 and 2003, infectious diseases decreased while the prevalence of chronic diseases such as diabetes and cardiovascular disease increased. Depending on the criteria used, 13.7 percent to 24.8 percent of all Chinese adults aged thirty-five to seventy-four were said to have MetS. Overall, urban residents (those not engaged in farming who lived within cities and towns) had the highest rates of obesity compared to rural farmers. In urban areas, men had higher rates than women. This was reversed in rural areas where women are more likely to be obese than men. Here, men are responsible for the energy-intensive farmwork that maintains cardiovascular fitness and body weights; women tend to have the less labor-intensive work of food processing, cooking, and distribution. There may also be social pressure



for women to gain weight as a sign of household affluence. In these ten years many Chinese have moved from rural to urban locations for employment and higher pay, leading to a shift from physically active agricultural labor to less labor-demanding occupations with long hours, limited movements, and little time to get up and walk around. In urban areas the bicycle was the main form of transportation ten years ago, now many more use cars, taxis, and mass transportation (Wang et al. 2007). MetS has catastrophic cost implications for developing nations. In China, diet-related chronic diseases account for the deaths of 2.6 million people annually—42 percent of all deaths. In 1998, total hospital spending for these chronic diseases was estimated at $11.7 billion U.S. dollars, which is 23 percent of all hospital costs and 1.6 percent of China’s gross national product (Wang et al. 2007).

Seasonality and Metabolic Fitness The multifactorial basis of these disorders makes the manifestations of MetS appear highly variable among various human groups, confounding our understanding of the commonalities. I propose that we view the chronicities of the modern lifestyle as the commonality and the primary cause of MetS. Humans, and all mammals, living in a natural setting experience annual cycles of seasonal changes that produce variation in activity levels and caloric intake from food resources. For millions of years as hunters and gatherers, humans lived active food production lifestyles that produced daily and seasonal variation promoting cardiovascular and metabolic fitness (Hurtado and Hill 1990; Wilmsen 1978). Seasonal physical activity levels and metabolic rates have been documented among pastoral nomads (Beall et al. 1996) as well as agricultural populations based on cash crops (Huss-Ashmore et al. 1989). Heart and metabolic rates varied from day to day and seasonally as required to survive. Adjustments in metabolic rates are primarily physiological responses to needs of the moment. Prior to modernity, variability of the metabolic system was the norm. With transition to a modern lifestyle, food is relatively constant throughout the year, and daily physical activities are routinized to a relatively low level. The chronicities of the modern lifestyle are embodied by infrequent metabolic variation and overconsumption of calories leading to obesity. By not regularly increasing and decreasing our metabolic rates in our everyday lives, chronic metabolic disorders appear. This affects individuals while in the fetal environment of their mothers, and is compounded as they age from childhood to adult and then elder. The dominant genetic explanation for diabetes is James Neel’s (1962, 1999, 1982) “thrifty genotype theory,” based on the proposition that for 99 percent of human existence we were hunters and gatherers living a life of feast and famine. Cycles of food deprivation selected for individuals who could quickly metabolize food into fat stores. This thrifty gene would be detrimental when



populations modernized to a plentiful food supply. Decades of research question this assumption of Neel’s thrifty gene hypothesis, even suggesting that famines are more frequent in recent agricultural societies. An early cross-cultural analysis by Lee (1968) found that of the fifty-eight documented societies who were hunters and gatherers, half emphasized gathering of vegetable items more than hunting, one-third emphasized fishing, and only one-sixth of the cases depended mostly on hunting. Women, as the primary collectors of vegetable materials, often supplied more consistent calories to the diet than did men. The Khoisan of the Kalahari Desert in Southern Africa, who reside in a particularly harsh environment, actually have more leisure time than people in developed countries. In general, hunters and gatherers are physically active mobile populations using a wide variety of food resources. This enables them to exploit resources that are seasonally abundant in some areas while not abundant in others. A meta-analysis of nutritional studies of hunters and gatherers and agriculturalists concluded that the overall food securities of recent foragers and preindustrial agriculturalists are very similar to one another. These results “offer no support for the thrifty genotype proposition that past foraging populations likely had access to less food, and experienced particularly severe and frequent feast and famine cycles of nutrition, thereby providing a selective advantage to thrifty genotypes” (Benyshek and Watson 2006: 124–125). The chronicities of modernity theory is an alternative to the thrifty gene hypothesis, since it does not rely on selective advantages for a genetic predisposition for these metabolic disorders. Human and mammal populations experience similar metabolic disorders with the shift from seasonality to chronicity. The important role of seasonality is illustrated with two studies in which I have been involved, comparing people in rural and urban Alaska. Remote communities continuing to live a food production lifestyle of hunting and fishing, based on the seasonal variation in weather and food resources, have low rates of diabetes and heart disease. In the first study (Smith et al. 2004), five rural communities were selected, one from each of the major Native cultural areas. All had a population of 250 to 800 people and they had no roads connecting them to other communities. Although they were active subsistence hunters and fishers, they were served by modern schools, medical clinics, and satellite television communications. Globally produced foods and products were imported via small airplanes or occasional boats. Rapid ethnographic assessment and structured interviews showed that a wide variety of community members were involved in food procurement, processing, and distribution. Although a few individuals were hunters or fishers, an array of ages and genders participated in cutting, smoking, packaging, storing, and cooking subsistence foods. Based on their particular geographic location, salmon, halibut, whale, moose, and seal were major protein sources. The comparable urban population was also consumers of subsistence foods; they received these as gifts and were much



less involved in the food production process that promoted daily activities. The rural population had greater body weights and consumed more calories than the urban population, but had lower levels of blood glucose, cholesterol, and hypertension. Ninety-six percent of the rural respondents had blood sugar readings within normal range compared to 89 percent of the urban; for cholesterol 90 percent of rural and 69 percent of urban dwellers were within the normal range. Systolic blood pressure was within normal range for 94 percent of the rural and 87 percent for urban. Those within normal range for diastolic blood pressure were 100 percent for rural and 88 percent for urban (Smith et al. 2008). In the second more refined study, Native elders of two subsistence-based rural communities in northwest Alaska were compared with elders from the same communities who had moved to an urban area. Once again the rural elders had higher levels of physical and mental well-being and lower levels of diabetes and heart disease. We concluded that those who live in rural communities have better mental and physical health indicators (Smith et al. 2009). These studies point to a food production lifestyle, where daily activities change with the seasons, as the normal human condition; low levels of daily physical activity with consistent sources of calories from food is the abnormal human condition.

Health Consequences of the Chronicities of Modernity and Globalization Globalization has reshaped societies, nations, and identities for the past five hundred years, since the first expansion of European colonization and imperialism. With the growth of capitalism and the Industrial Revolution in the eighteenth century, new technologies developed supporting dramatic growths in human population. The culture of capitalism and scientism—characterized as the “Spirit of Capitalism” (Weber 1958)—changes social, economic, and spiritual life in very specific ways. As Eric Wolf (1982) demonstrated, European capitalism dramatically changed economic and power relationships among non-European peoples by introducing trade and the selective harvest of salable natural resources. Intensification of worldwide social relations now link distant localities in such a way that local processes are shaped by events occurring many miles away and vice versa. Production, distribution, transportation, communication, and financial systems link the local to the global. As the number of connections increase there is a decrease in the time it takes to move people, products, and ideas—space and time are reorganized (Appadurai 1996; Inda and Renato 2007). With globalization, governments and corporations attempt to stabilize, standardize, and routinize their bureaucratic routines as the number of people they involve grow. As individuals interact with or become part of these social structures and economies their behaviors become less diverse and more uniform.



Wallace (1970) portrayed this cultural process as the organization of diversity and the replication of uniformity. Foucault (1977) writes about this as modern institutions controlling bodies through systems of power and knowledge, and Bourdieu’s (1977) “habitus” portrays these as socially acquired everyday routines of thoughts and actions. Indigenous peoples confined to reservations are examples of how governments create, maintain, and impose chronicities on specific populations. U.S. reservation communities are not only the earliest populations to embody MetS, they continue to have the highest rates of MetS morbidity and mortality. By being forcibly contained politically, economically, and bodily to small resource areas, history shows that they quickly became limited in their physical activities and dependent upon the U.S. government for energy-dense, industrially processed food. More broadly speaking, as populations are brought into global systems, individual behaviors are increasingly patterned by similar calendars and schedules based on clocks, daily routines, workweeks, and annual cycles of events. A cognitive focus on harvesting the changing seasonal food resources is replaced by a focus on a workday, defined by society rather than the natural environment. Large numbers of people move in synchronicity with a globalized time that patterns when to eat, sleep, and work. As transactions occur in less time and in greater numbers, there is a sense that time is moving at a faster pace from the present into the future. This shift from environmental seasonality to the embodiment of socially constructed time is a major element in the chronicities of modernity that affects the onset of MetS. Diffusion of medical technologies and vaccines reduces childhood deaths from communicable diseases while increasing life expectancies and chronic disorders (Armelagos and Harper 2005). But at the same time, aspects of globalization jeopardize health by eroding family-based social systems, denigrating the environment with pollution of the water, air, and land, and by disseminating consumerism accentuating the gap between the rich and the poor (Guest and Jones 2005). Delocalization of foods and resources create powerful economic forces influencing people to move to urban centers for employment and health services. Low-wage workers migrate transnationally to take advantage of employment opportunities, creating communities with poor health and working conditions. Those continuing to live in local communities become dependent upon foods and goods produced elsewhere in the world. Relatively inexpensive commodities are widely advertized and distributed through the world markets controlled by multinational corporations. This profound cultural transformation of the capitalist nation-state encourages the development of a myriad of rules, regulations, values, and laws. The culture of capitalism encourages the conversion of items and activities into objects that can be bought and sold in the marketplace (Robbins 2005). Even for items and activities with no clear boundaries, science socially produces objects with clear boundaries in well-defined hierarchies of cause and effect (Latour 2004:



22). For example, healthcare activities once associated with family, kin, and tribe become the role of professionalized healers where health care is converted into monetary activities. Based upon capitalism and scientism, the biomedical professions reframe and transform the human body, disease, and time into measurable objects. The physician counts body weights and blood sugar levels while the nutritionist measures the calories and nutrients consumed. What is measured and counted significantly differs from what the local communities perceive as important to their overall health and well-being. Yet, these economic and scientifically measured objects influence policies at the state, national, and global levels. These socially constructed measures formulated by transnational health organizations now supersede national healthcare systems, furthering the spread of the chronicities of modernity that set parameters on the everyday lives of local peoples. In these ways, social and cultural institutions promote low physical activity, consistent energy intake from foods, and chronic levels of psychosocial stress. Wherever there is a conjuncture of these three factors on the life situations of individuals, the risk for MetS is greatly increased.

Chronicities of Physical Activity Recent controlled studies demonstrate that chronicities of the modern lifestyle can be modified, thus giving hope that MetS can be prevented. The Finnish Diabetes Prevention Study, for example, shows that 30 to 67 percent of people with impaired glucose tolerance can reduce their progress toward detrimental manifestations through adherence to lifestyle interventions emphasizing body weight control, physical activity, and dietary modification. A seven-year follow-up study of the participants showed that sustained risk reduction continued in 43 percent, even after discontinuation of active counseling (Lindstrom et al. 2003). A continuing study showed that even low-impact exercise and walking conferred benefits (Laaksonen et al. 2005, 2007). Vigorous physical leisure time activities, including sports and weight resistance as well as moderate activities such as housework, home improvements, gardening, and walking to and from places of work, have also been shown to reduce risk (Rennie et al. 2003). Similarly, in the Fels Longitudinal Study in Ohio (Remsberg et al. 2007), habitual physical activity reduced the risks among young adults, mostly for men and less for women. Extensive anthropometric measurements collected from 237 men and 249 women aged eighteen to forty years were correlated with selfreported levels for work, sport, nonsport leisure, and total physical fitness. Being physically active was shown to be a primary prevention for MetS for both men and women (see also Irwin et al. 2002). Based on these and other recent studies, the 2005 Consensus Statement from the International Diabetes Federation proposed that moderate physical activity for 180 minutes per week would reduce the risk of MetS by 50 percent,



only sixty minutes was necessary with more rigorous exercise (Alberti and Zimmet 2005: 477). These data show that diabetes and the chronic disorders are reversible through social and cultural changes. For those who have the motivation and life situation to implement and continue this positive change to a healthy lifestyle, the benefits are great. Now that we have controlled studies showing that low, moderate, and intensive lifestyle intervention does reverse or prevent the progress toward diabetic symptoms, the public health challenge is to forestall the MetS epidemic by influencing a large proportion of a population to live a healthy active lifestyle. However, prevention programs face enormous challenges. A third of the Finnish intervention subjects, for example, attained none or only one of the predefined goals after one year into the study. Lifestyle change and medications focus on the individual, and decades of a biomedical focus on individual counseling and regimen control has not worked. The approach presumes that individuals have a choice about what they eat, how they live, and how they work, and that they have resources to implement change. The chronicities of modernity theory challenges us to look beyond the individual to the larger parameters of life situations: family dynamics, political and economic inequalities, architectural building designs, transportation systems, and dominant cultural themes and ideologies.

Chronicities of Food The general direction of transformations in food use throughout the world, especially in the past two or three centuries, has involved an increasingly rapid delocalization of food production and distribution. Food varieties, production methods, and consumption patterns are disseminated throughout the world in an ever-increasing and intensifying network of socioeconomic and political interdependency. For individual and community health, delocalization shifts the provision of food, energy sources, and services from the local setting to points of market exchange outside the local area. These shifts reconfigure social relations of production (Pelto and Pelto 1983). The effects tend to be more positive for the developed world, the populations of which have greater access to a wider range of food products. For local food-producing communities, this leads to drastic changes in daily life, as the loss of control over food production and distribution systems causes a restructuring of social relationships and daily physical activities. Development of industrial technologies enables mass production and the rapid distribution of high-calorie, energy-dense foods. In Europe by the late 1700s, wheat and cereal grains were produced, milled, and stored in large quantities for urban consumption. Ships transported these grains from the United States and Russia to European ports while smaller boats distributed grains along rivers and through canals (Pelizzon 1994). With the building of cross-continental



railroads in the late 1800s these carbohydrates became the dietary foundation, replacing locally produced foods in many communities. By the 1930s, industrially refined, highly processed, energy-dense foods had been developed: Edible liquid fats and oleomargarines were used in cooking, for instance; high-fructose corn syrup was used as a drink sweetener (Popkin and Nielson 2003). A “nutrition transition” occurred as food industries produced relatively inexpensive, energydense foods that were widely advertized and distributed through the world markets (Popkin et al. 2001). Popkin (2004) reports that in China, over a matter of twenty years from 1980 to 2000, large shifts had occurred toward increased edible oil intake and increased sweetening of the diet, leading to the consistent availability and overconsumption of high-calorie, energy-dense foods. The decade-long Strong Heart Study (SHS) among three Native populations in Arizona, Oklahoma, and the Dakotas provides further longitudinal data that challenge received wisdom of the role of nutrition and specific foods as a cause for cardiovascular disease and diabetes. Many published reports from the SHS have appeared in the literature over the past decade, comparing three American Indian populations to the average U.S. population of NHANES III, the National Health and Nutrition Examination Survey (U.S. Department of Agriculture 2006). Stang and colleagues (2005) found that nutrient intakes varied little between the three populations, and overall, few differences were noted compared to the U.S. national averages for the NHANES III participants. Their most notable conclusion was that energy intake differences between NHANES III and SHS participants were not consistent with the dramatic increase in cardiovascular disease and diabetes. Simply stated, these dietary data did not account for the dramatic increase in heart disease, obesity, or diabetes (Wiedman 2005a). Compared with an earlier Phase 1 SHS report (Welty et al. 2002), small changes in caloric energy intake did not explain the astounding increases in cardiovascular disease or diabetes. Various types of dietary fats and carbohydrates have been discounted as causal factors (Hu et al. 2001; Willett 2002). These data indicate that no single food or nutrient is responsible for MetS. These studies also reveal the methodological complications of assessing the nutrient content of composite foods derived from a combination of globally produced foods (Smith and Wiedman 2001). Composite foods like pizza and American Indian fry bread combine global food products into hybridized meals that replace traditional meals. For example, cornmeal was the traditional Indian food; this was replaced by wheat flour during the reservation years when the U.S. government issued food rations of flour and bacon. Fry bread, a mix of flour and water cooked in bacon grease, provided a stable diet during near starvation days and continues today as a symbol of Indian identity and a pervasive Native North American food. However, from a survey of Indian fry breads, Smith and Wiedman (2001) documented that the caloric content of this energy-dense food, even though it is made from just a few ingredients, is highly variable according to cooking conditions.



Industrially produced foods that are transported quickly through global commodity chains controlled by multinational corporations enable large populations of people to have a consistent supply of high-calorie, energy-dense, and relatively inexpensive foods throughout the year. This homogenizing of local diets to a few consistently available food components diminishes seasonal dietary variety and the physical activities related to producing local foods.

Chronicities of Stress MetS is the embodiment of the chronicities of the modern lifestyle especially when viewed as the body’s physiological response to emotional suffering from adverse, traumatic stresses. Social and economic inequalities, traumatic historical experiences, daily occupational situations, and individual psychosocial stresses place specific population segments at greater risk for MetS. Stress and cortisol levels are now linked to many physical disorders, including MetS. Stress produces observable changes in the neuroendocrine system, affecting the production and circulation of the hormones cortisol, glucagons, catecholamines, and insulin that control blood pressure, blood glucose levels, and heart rate. Culture and the individual’s perception of stress influence what is threatening and potentially stressful and the physiological and social responses, which can be either adaptive or damaging. Stress involves the brain and the cardiovascular, immune, and other systems through neural and endocrine mechanisms. Acute stress initiates the fight-or-flight response that was selected for throughout human evolution. During these acute events the body produces the hormone cortisol, needed to release energy to escape predators. Modernity brings together an array of everyday events that produce chronic stresses that lead over time to wear and tear on the body (McEwen 2007). A number of studies conducted in the United States illustrate these connections. Jo Scheder (1988), for example, examined life conditions of Mexican farm laborers in Wisconsin through ethnographic, psychological, and biochemical methods. She correlated diabetes with workers who spent more years in migrant labor and reported greater numbers of stressful life events. Another example is provided by Maria Yellow Horse Brave Heart, in her work linking post-traumatic stress syndrome caused from “historic trauma,” the long history of domination and oppression to diabetes, cardiovascular diseases, and related health disorders among Native Americans (Brave Heart 1999). Multiple generations of stressful events are associated with continued loss of identity, demoralization, and ongoing emotional suffering, key elements that maintain the chronic stresses resulting in metabolic disorders (Ferreira and Lang 2006). From a biocultural perspective, William Dressler and colleagues (Dressler 1995) developed the Cultural Consonance model linking social status inconsistencies with chronic diseases such as hypertension and circulating levels of stress hormones, the catecholamines (Gravlee and Dressler 2005). This correlation has been replicated



among the Caribbean islanders of St. Lucia and black Americans in Alabama and in various communities in North and South America (Dressler et al. 2007). And as a final example, Raikkonen, Matthews, and Kuller (2007) link psychosocial factors to alterations in the autonomic nervous system such as elevated heart rate, reduced heart rate variability, and elevated cortisol level, leading in turn to MetS. This fifteen-year population-based prospective cohort study included healthy middle-aged women in the United States with symptoms of depression and very stressful life events. Frequent and intense feelings of anger and tension were associated with the cumulative prevalence and increased risk for developing MetS. A low physical activity level was associated with depression, heavier consumption of alcohol; smoking with depressive traits of anger and anxiety. A physiological response of “fight or flight” originally beneficial to protect the body in the short term is now with modernity embodied as a constant state of chronic stress increasing the risk of MetS for many individuals.

Global, Community, and Individual Chronicities The chronicities of modernity is a theoretical perspective that hypothesizes the sociocultural processes at the global, individual, and local community are the causes of MetS. Higher risks for MetS appear wherever there is a conjuncture of social and cultural chronicities experienced by a particular segment of society and this varies greatly from nation to nation. The risk of MetS does increase with age, but what was once considered an adult disorder is now affecting children. The inner-city uneducated poor were at highest risk, but now it is increasingly common among the well educated with higher incomes. Women consistently have higher prevalence rates, but in some nations it is men. Urbanized populations have higher rates, but so do many rural areas and especially indigenous peoples restricted to reservations. People whose lives are contained with few alternatives are at most risk for MetS. Those who face extreme poverty, unemployment, and environmental pollution have few alternatives to modify their individual behaviors. Persons on reservations, in remote communities, and poor inner cities do not have the wide array of food choices or physical activities that would enable them to change their daily lives even if they wanted. Urban workers, rich or poor, who work long hours do not have time or energy to exercise or take part in recreational activities that would promote metabolic fitness. The risk would be greater for persons confined to an office cubical answering phones or looking at a computer screen all day. Women with household responsibilities are often restricted in these same ways. Urban and suburban neighborhoods often do not have pedestrian-friendly walkways or green spaces for physical activities. In many localities high crime rates influence children to limit their activities to indoors. Extensive hours involved with the television and video and computer games further reduce metabolic fitness. These are some social and cultural



behaviors that a community and nation would need to address in order to reduce the MetS epidemic. Building upon Estroff’s outline of chronicity (1993: 274), a scenario of the person with MetS can be portrayed at the micro level of individual, family, and healthcare provider. Physicians and caregivers, in response to patient’s chronic metabolic disorders, make arrangements to stabilize, regulate, and control the amount and type of behaviors, foods, and physical activities that are acceptable regimens. Daily “variability” is transformed to a life of daily chronicity as a person transitions from being an active commodity producer to being dependent, regulated, and controlled. Social structures of institutions and family caregivers increasingly stabilize and routinize everyday life as the individual becomes more dependent. With hospitalization or institutionalization, everyday life becomes even less variable and less physically active. Persons who have never exhibited the symptoms of MetS are at greater risk when they become homebound, hospitalized, or placed in nursing homes for other disorders. From the perspective of chronicity theory, healthcare systems and institutionalization increases the risks for MetS. In these cases MetS results from social and cultural iatrogenic causes.

Implications The theory of chronicity prioritizes cardiovascular fitness, nutritional balance, and reasonable stress levels as ways to address the chronic metabolic disorders of MetS. First and foremost is to enhance cardiovascular and metabolic fitness by promoting a variety of physical activities in the daily and weekly lives of individuals. The MetS epidemic will have to be addressed at a multitude of levels: at international, national, regional, community, family, and individual levels (Nishida et al. 2004). This can only be accomplished with a multisectoral and broad-based public health approach to prevention (Kumanyika et al. 1998). For decades healthcare providers and medical researchers have actively pursued ways to educate and counsel patients on health, diet, and exercise. Individual patient education and counseling in the clinical setting has not made a large difference in reducing these health disparities. This “blaming the victim” approach has not produced results, thus a shift to the larger social, cultural, and global factors is necessary. Communities are beginning to develop innovative programs to promote metabolic wellness, although not conventionally spoken of in these terms. Rural and indigenous communities should be supported in their pursuit to retain selfsufficiency in the production, distribution, and local consumption of nutrientrich foods such as fishing, hunting, and farming of fruits, vegetables, and grains (LaDuke 2005; Reddy 2002). As Ferreira and Lang (2006) contend, the chronic stresses of emotional suffering and historic trauma can be addressed through community empowerment by building emotional liberty. Building healthy



self-sustaining communities is possible, as our research documented for Alaskan subsistence communities; the local food production lifestyle promotes metabolic fitness, nutritional, mental, and spiritual wellness. National and local policy makers can influence companies, stores, government agencies, schools, university dormitories, cafeterias, and other organizations to make wise decisions affecting the availability of quality food and drink. Consumers should be motivated to make healthy purchasing decisions. A shift in perspectives is needed to promote the daily physical activity of people through the design of buildings, transportation systems, and recreational areas. By promoting the positives of healthy communities and by addressing the necessary structural changes, rather than the negatives of disease prevention and individual regimens, community empowerment could reduce the pandemic of chronic diseases associated with the industrial lifestyle (Wiedman 2005b). It is imperative that metabolic fitness, good nutrition, and reasonable psychosocial stress levels be emphasized at the individual, community, national, and international levels. Efforts at multiple levels should empower communities and leadership with MetS knowledge presented in understandable and culturally appropriate ways to (a) influence accessibility to affordable and healthy choices of foods in local communities; (b) enhance activity levels with designs of transportation systems, work, exercise, and recreational facilities; and (c) promote the redevelopment of local food production lifestyles in communities that want to farm, garden, ranch, hunt, or fish. Like the reconceptualization of MetS as a diverse set of physical disorders that cluster together, with the concept of chronicity we can now better understand sociocultural aspects of the modern lifestyle that cluster together as a set of causes for these chronic metabolic disorders. Implications for future research are many as this theory of chronicity focuses investigations on sociocultural systems, rather than solely on genetic and biological explanations. NOTES

I thank nutritionists Dr. Janell Smith and Dr. Rena Quinton for working with me over the years to integrate nutritional science and anthropology into our collaborative research. Alicia Diaz assisted greatly in assembling the recent literature. Also, my heartfelt thanks to Felicia Wiedman; without her daily attention to life’s details, this research would not be possible. This chapter was first presented at the American Anthropology meeting in Washington DC, December 1, 2007, at a presidential invited session of the Society for Medical Anthropology titled Inequalities, Chronic Illness and Chronicity: Dedicated to the Memory of Gay Becker, organized by Lenore Manderson and Carolyn Smith-Morris.

3 VVVVVVVVVVV Is “Chronicity” Inevitable for Psychotic Illness? Studying Heterogeneity in the Course of Schizophrenia in Yogyakarta, Indonesia BY RON J . G O O D, C A R L A M A RC H I R A , N I DA U L H A S A N AT, MU H A N A S O F I AT I U TA M I , A N D S U B A N D I

Schizophrenia has long been viewed as an almost inevitably chronic and degenerative form of mental illness. This chapter examines the course of schizophre-

nia-spectrum mental illness in Yogyakarta in central Java, based on a seven-year longitudinal study that follows a small series of cases of individuals with mental illness and their families. It examines questions about the role of culture in shaping the trajectory of illness over time, as well as the effects of inadequate mental health services on the course of mental illness. The association of the powerful and stigmatizing terms—chronic and degenerative—with schizophrenia is rooted in the history of Western neuropsychiatry. Emil Kraepelin (1913), the early twentieth-century German pioneer of psychiatric diagnosis, still influential today, argued that psychiatric illnesses should be defined in part by their typical longitudinal course (cf. Good, forthcoming). He distinguished manic-depressive or bipolar psychoses from “dementia praecox,” later schizophrenia, not only in terms of symptoms, but in terms of the normal, expected course of the condition. Manic-depressive disorder was seen to fluctuate between periods of mania, produced in part by an excess of “will,” and depression, by a loss of “will.” He conceived schizophrenia as an early onset form of dementia, marked by disorders of thought and reason almost inevitably chronic. Over his lifetime, Kraepelin became increasingly pessimistic about the potential for recovery from dementia praecox, reducing his early “optimistic” estimates of 11 percent recovery downward to 4 percent. A chronic course of psychotic experience was thus identified as a defining characteristic of schizophrenia in Kraepelin’s early, influential writings, with the term chronic, when applied to persons with mental illness, marking the individual for life.




The term degenerative not only signifies that an illness is expected to become increasingly severe with time, but links schizophrenia to nineteenth-century and early twentieth-century thinking about degeneracy—a concept that powerfully influenced Kraepelin but remains largely hidden from awareness today (Good, forthcoming). In a book called Faces of Degeneration: A European Disorder, c. 1848–c. 1918, Daniel Pick (1989) outlines the importance of the theme degeneration and degeneracy in France, Italy, and England. Linked to evolutionary theory, degeneration accounted for the status of some societies encountered by colonialists—degenerate societies—as well as pathological families and individuals, families whose degenerative hereditary processes produced increasing numbers of mentally and morally defective individuals: idiots, criminals, and the mentally ill. These ideas were central to evolutionist theorizing about race, class, and society. They were explicitly articulated in conservative political ideologies, including Kraepelin’s. And they played a special role in efforts to understand serious psychotic illness. For German neuropsychiatrists, including Kraepelin, the question of why some forms of mental illness seemed to produce chronic deterioration, while others were cyclical or allowed recovery, was inevitably caught in the ideology of degeneracy (Roelcke 1997). Kraepelin (quoted in Berrios and Hauser 1988: 817) wrote about “degenerating psychological processes” and “dementia praecox,” commenting: The common feature of those illnesses which we group under the name of degenerating psychological processes is the rapid development of a lasting state of psychological weakness . . . What we call dementia praecox is the sub-acute development of a peculiar, simple condition of mental weakness occurring at a youthful age.

Kraepelin says explicitly that hereditary factors seem to be present in about 70 percent of cases of dementia praecox and that the “real nature” of this condition remains “totally obscure” (Kraepelin 1899/1990: 153). Nonetheless, one source of the long-standing idea that schizophrenia is a disease for which there is little or no chance for recovery seems to be the historical linking of dementia praecox to degeneracy (Zubin et al. 1985; Barrett 1996). These ideas of degeneracy and mental illness are at least partially responsible for the long entanglement of schizophrenia in eugenics movements, both in the United States and Europe. It is tempting to suggest that the conviction that psychotic illnesses are a form of degeneracy, linked to social, genetic, and moral degeneracy, is responsible for the hopelessness associated with efforts to treat psychotic illness and the rise of asylums built to house the chronically mad in squalid conditions for their whole lives. This is revisionist history, not true to the complexity of reform movements that produced diverse forms of psychiatric institutions as settings for rest and recovery. But certainly the conviction that psychotic illness, particularly schizophrenia, is lifelong and degenerative, that



persons once diagnosed with schizophrenia can expect a life of psychosis and profound disability, has contributed to hopelessness, despair, and stigma. The view that schizophrenia is almost inevitably chronic and degenerative is formally enshrined in contemporary diagnostic manuals. The American Psychiatric Association’s Diagnostic and Statistical Manual, Third Edition (DSM III) stated this in strong terms: “a complete return to premorbid levels of functioning in individuals diagnosed with schizophrenia is so rare as to cast doubt upon the accuracy of the diagnosis” (American Psychiatric Association 1980: 191). While the 1994 edition, DSM IV, is somewhat more measured, it gives a similar message: “complete remission (i.e., a return to full premorbid functioning) is probably not common in this disorder” (1994: 282). This view is widely shared among clinicians, and from colonial times to the present has been taught to psychiatrists worldwide. Over the last several decades, a variety of forces have begun to change this pessimistic view of schizophrenia. First, the development of the initial antipsychotic pharmaceuticals beginning in the 1950s raised hopes that persons could live in the community and manage psychotic symptoms, even if they did not recover completely, and that more effective medications would be forthcoming. These early medications contributed to a powerful “deinstitutionalization” movement, which focused on civil rights and led to the closing of a large number of stand-alone hospitals in North America and Europe. These early changes, along with the development of second-generation antipsychotic medications and the explosion of brain sciences, provide renewed hope that this complex illness will one day be at least partially understood, treatable with a range of pharmaceuticals and psychosocial interventions, and even potentially prevented. Second, a series of longitudinal epidemiological studies, going back to the 1960s, have raised more basic questions about the “natural history” of schizophrenia, challenging assumptions held by many clinicians and the public that schizophrenia is inevitably chronic. The International Pilot Study of Schizophrenia, which initiated more than twenty-five years of WHO-supported investigations of the long-term course of schizophrenia in eighteen sites in fourteen countries, may have been wrong in its claim that outcomes are better in “developing” than “developed” countries (Cohen et al. 2008). However, the initial findings that in some cultural settings as many as half of persons with schizophrenia recover within three years were enormously provocative, suggesting that social and cultural environments may be more important than “natural history” in determining the course of psychotic illness (Hopper et al. 2007). The WHO studies were followed by research in Switzerland (Bleuler 1978; Ciompi 1980) and Germany (Huber et al. 1975) that documented good outcomes for half to two-thirds of persons with schizophrenia when followed over long periods of time. The findings of Courtney Harding and her colleagues (1987a)— that one-third of the most severely ill persons from the back wards of Vermont State Hospital recovered completely when moved into community settings, and



that another one-third had substantial recovery—supported even more strongly a view that long-term degeneration, “progressive worsening” in DSM IV’s terms, is far from inevitable. Together, these studies began to suggest a different picture of the course of psychotic illness and raised questions about what recovery means and about which persons recover from schizophrenia when and why rather than whether recovery is possible. Third, consumer advocacy began to place issues of recovery clearly on the agenda. Since the 1970s, representatives of the consumer movement have fought against stigma and public perceptions of illness, demonstrated how professional services may be implicated in stigmatizing those with mental illness, and lobbied for mental health policies and research that focus on recovery (Davidson 2003; Deegan 1994; Roberts and Wolfson 2004; Schiff 2004). Today, recovery can be used in the same sentence with schizophrenia in a way that even a decade ago was essentially not possible. Increasingly, a focus on chronicity and deficits is being replaced by genuine efforts to promote recovery as a reasonable goal of treatment (Anthony 2000). Thus, over the past several decades, a new “paradigm of recovery from schizophrenia” (Jenkins and Carpenter-Song 2005) has emerged, and new questions have been placed on the research agenda for mental health researchers. What are the typical courses of psychotic illness over time? What is the meaning of recovery when used to discuss courses of psychotic illnesses, and is full recovery from schizophrenia really possible? What are the characteristics of the subjective experience of psychotic illnesses, and how do certain forms of experience contribute to or inhibit recovery? Are there particular phenotypes of “the schizophrenias” that are more subject to good outcomes than others? What do social and cultural processes contribute to the course and outcome of schizophrenia, and how do these interact with biological processes, including the use of pharmaceutical agents? In what way do local worlds of meaning and power influence the experience of illness, and how do these contribute to the long-term course of illness and the potential for recovery? These questions are particularly important in cross-cultural research on schizophrenia. The WHO studies raise questions about the potential for better prognosis in some settings in Asia and Africa, a view challenged by Cohen and colleagues (2008). At the same time, mental illness is profoundly stigmatized in most of East Asia (Yanga Hsin and Kleinman 2008), and mental health services are terribly inadequate in many low- and middle-income countries (Desjarlais et al. 1995). These issues frame the questions our team has addressed in over a decade of research in Yogyakarta. In this chapter we use data from a set of longitudinal case studies of persons suffering psychotic illness in the city and district of Yogyakarta in central Java, Indonesia, as a basis for addressing questions of diversity of psychotic experience and course of illness. Are there really significant differences in how psychosis is experienced and responded to in distinctive cultural lifeworlds, and



how are differences obscured by the terminology of classical psychiatry? Along what dimensions does the course of illness vary, and how can anthropological research open up new understandings of such dimensions? Are there significant differences between “clinical course” and “social course” of schizophrenia? At the heart of our argument will be the claim that heterogeneity of psychotic experience—both across cultures and between individuals within a culture—is far greater than often recognized and that an examination of heterogeneity may offer clues to understanding what constitutes better care for persons with serious mental illnesses.

A Longitudinal Study of Cases of Psychosis in Java This project grew out of more than ten years of collaboration between the first author (Byron Good) and a team of researchers in both the Faculty of Psychology and the Department of Psychiatry of the Faculty of Medicine of Gadjah Mada University in Yogyakarta, Indonesia. Our collaboration began in 1996, when Byron Good and Subandi began ethnographic research with persons suffering psychotic illness in Yogyakarta, exploring their experiences and explanations of illness, the place of psychosis in Javanese culture, care-seeking, religious and spiritual healing, and mental health care. The study found that psychotic illness is deeply influenced by the presence of threatening spirits and spiritual forces, by attacks of black magic, and by diverse forms of religious healing. One of the unexpected findings of the study was that a significant number of the cases of psychosis seemed to have very rapid onset, with little sense of the long, slow, “insidious” onset often described as typical of schizophrenia (Good and Subandi 2004; Good et al. 2007). An epidemiological study, conducted by Good and Subandi in 2000, supported this initial impression, finding that clinicians rated 37.5 percent of all first episode first contact cases of psychotic illness as having “rapid onset,” defined as progressing from suffering an initial psychotic symptom to being frankly psychotic in two weeks or less.1 In 2001, Good joined with Dr. Carla Marchira from the Department of Psychiatry and colleagues in the Department of Psychology at Gadjah Mada University (including the other three authors of this chapter) to undertake an intensive, longitudinal study of eight cases of psychotic illness. That study provides the data for this chapter. Because rapid (acute) onset psychosis is often associated with better outcomes than slower onset psychosis, we undertook this project as a pilot study to develop methods that would allow us to examine the relationship between onset of illness and its course and outcome. We also set out to determine the feasibility of following patients and their families for longer periods of time, to gain experience in using clinical rating scales, and to develop an in-depth understanding of a small number of cases of psychotic illness, based on longitudinal qualitative and ethnographic interviewing. We visited and interviewed the eight patients and their families in their homes four



to six times during the first year, and we conducted annual follow-up interviews each year through 2007. We thus have relatively intensive, longitudinal data on these patients and families over a seven-year period.2 In what follows, we first provide short descriptions of each of the eight cases. We then examine several hypotheses about the relationship between onset of illness and its longitudinal course. We integrate into our analyses further discussion of several of the cases to explore possible social processes that may influence the course of illness. Our research indicates just how complex any effort to understand onset and course of psychotic illness is; and this finding will lead to our final observations about the variety of psychotic experience.

Brief Descriptions of Eight Longitudinal Cases of First Episode Psychosis Our sample consists of two young men and six young women, all living either in the city of Yogyakarta or in peri-urban villages within one hour drive of Yogya. All were recruited into the study beginning in the year 2000. We order the cases here in terms of the course of illness.

Case 1 Mas Anto3—Rapid onset, single episode, complete recovery Mas Anto lived in a village near Yogya with his mother, sister, and stepfather, a construction worker. His father left when he was four years old, and he has never seen him since. Anto completed only eight years of school though he was near the top of his class. He worked for one year as a servant in a wealthy household, returning home complaining of poor treatment, and began working at a small satay restaurant. Two weeks later, at age nineteen, he fell sick. One night he returned home from work late, obviously troubled. When asked what was wrong, he became angry and would only say that when he rode his bicycle past a graveyard, the spirits tried to take him into the graveyard. Anto went to work the next day. When he returned after disappearing for two days, his condition had deteriorated. He became very silent, walked around like a “zombie” with a blank look in his eyes, and acted very frightened. He tried to destroy any clothing made with the colors red and black. He felt ants were crawling in his body. At times he felt possessed by a black pig and crawled around on the floor making pig sounds. He was visited by the great Queen of the South Sea, who hypnotized him. At other times he was visited by the Sultan of Yogyakarta. He feared being poisoned and became angry with his mother, claiming she had made a deal with a spirit to take his soul in exchange for money. After one week, Anto was taken to a private psychiatrist, where he was prescribed an antipsychotic medication. He stopped taking the medications after three weeks, but resumed when the psychiatrist from our team provided him the medications, continuing them for about four months until his symptoms resolved. He visited several traditional healers during this time, who proved



unable to cure him. When we visited him at four months, he appeared recovered, had returned to work, and told us he could not remember what had happened. We have followed Anto for nearly seven years. His illness has completely gone. He has taken no medication since his episode and shows no residual impairment. Although he is happy to talk with us, he is not interested in remembering or discussing his illness. He is more concerned with the loss of his father and with finding enough work to move forward with his life.

Case 2 Mas Tri—Sudden onset, five brief psychotic episodes, mild impairment Mas Tri lived in a household with extended family in Yogyakarta when we first met him. Unlike his three siblings, he completed high school with high marks. Because his family was poor, he was unable to attend university, and instead moved to Sumatra, lived with his uncle, and worked on a coffee plantation. He noted occasional alcohol and marijuana use while in high school and in Sumatra. Contracting malaria, he returned home to Yogyakarta; upon recovery, he began a laborer job in an oil distribution agency. One week after beginning work, he suddenly became psychotic. He had difficulty sleeping and began behaving strangely. One night a voice told him to go to a house nearby to visit a young woman, whom he now thought was his high school girlfriend but was actually the current girlfriend of his mate. Wearing only his underwear, he called loudly for her, and soon afterward was hospitalized. He was released after a week, appearing recovered within a month. Over the next six years, he had four relapses, each brief yet some requiring short hospitalizations. One occurred when he was attending a religious service, another time when he was criticized by his aunt. He used medicine sporadically, with family often complaining about the cost. Between episodes, he worked intermittently, expressing shame and worrying about falling sick again. To us he appears socially functional, but he seems to take little initiative, complaining that potential jobs are beneath those his friends now have.

Case 3 Mbak Yanti—Sudden onset, two brief psychotic episodes, mild impairment Yanti, a daughter of unskilled laborers, lived in a small neighborhood in Yogyakarta. One of five children, she was born the smaller of twin daughters. Developmentally slower than her twin, she dropped out after primary school, having failed to pass to the next grade several times and becoming embarrassed at being older than the other children. Often fearful and hesitant, she was the opposite of her bright sister who graduated high school and eventually married. At age seventeen, during afternoon prayers one day, her great-grandfather, whom she loved and who had died five years earlier, appeared to her and told her to take a “flower bath.” While alive, the great-grandfather had chastised Yanti’s grandmother for claiming that Yanti’s “brain was rotten,” her “ears were



dirty,” and that she needed to bathe. Yanti was terrified by the appearance of her grandfather and of an angel in a white dress. She became confused, talked and laughed to herself, had difficulty sleeping, became violent, and tried to run away. When her family tied her to a wardrobe, she pulled herself to the window and smashed the glass with her head. After a religious leader’s prayers failed to cure her, she was hospitalized for three months. She returned home largely recovered. She had another episode and was hospitalized two years later, again recovering after treatment. It is difficult for us to tell whether Yanti suffers negative symptoms related to her illness, or whether the description of her behaviors reflects her developmental disorder. Though she does general housework, she often awakes at noon and then spends hours watching TV. Her family considers her acutely sensitive and takes care not to criticize her. Since 2002, she has continued taking low-level first-generation antipsychotic medications, which she says help her sleep. She has had no further episodes of psychosis. She lives with her family, does housework, shows little motivation, has few friends, and lives a fairly restricted life, though her illness seems less significant than her developmental impairment.

Case 4 Mbak Sur—Sudden onset, recovery, then relapse and long-term illness Mbak Sur grew up living with her grandparents in a small village outside of Yogyakarta, a few miles from where her parents lived. At nineteen, she went to Batam as a migrant laborer and worked there for two years. She was happy, had friends, and wanted to extend her contract; but her parents insisted she return home and begin living with them. They were very authoritarian. At twenty-two, a man asked her parents to marry her, but they refused. When she met with a friend of the man who had proposed, he told her rather ominously (as she recalls), “Do you want to be responsible for the sins of men all over the world?!” Within three days she became psychotic. She believed this man, or a healer he had contacted, had done magic against her. She saw her mother as Dracula, saw many gravestones, and felt that things such as the orientation of her house had changed. She heard voices of children and thought they wanted to kill her because they considered her a member of the old Communist Party. On the ninth day of her illness, she was taken to a hospital and treated for eighteen days. She began antipsychotic medications, and after about four months had recovered, leaving no apparent positive or negative symptoms. Her recovery was helped when the man whom she felt had threatened her came to apologize and tell her he had not tried to hurt her. Sur lived with her parents, whom she found terribly controlling (refusing to let her go to Jakarta to work), intrusive (cutting her hair while she was asleep), and abusive (calling her stupid) for a year, apparently fully recovered. She then returned to Batam to work (against her father’s advice). While there, she became sick again and had to return home. Since that time, her psychosis has worsened.



Mbak Sur’s mother remains quite authoritarian, often ridiculing her daughter and expressing anger at her. She and her husband sometimes refuse to purchase her medications, accusing Sur of only pretending to be sick. Sur remains very psychotic and lives at home in a back bedroom. Her parents are hopeless about her future.

Case 5 Mbak Wi—Sudden onset, continuous psychotic symptoms, modest impairment Wi was a thirteen-year-old schoolgirl, daughter of two schoolteachers in a village just outside of Yogya, when one day in 2001 she experienced a sudden onset psychosis. There was no evidence of a prodrome, decline in her school performance, or major stressor. That day, Javanese spirit—Butoijo, a large green giant—appeared to her while she was in school. When she came home she found her bedroom filled with spirits, including a man with orange clothes and a terrible face. She saw a man who had killed himself hanging in her room and a big green snake threatening to attack her. She felt someone wanted to rape her and that others wanted to kill her. Her father appeared to be her mother, and her mother her father. Wi was taken to the university hospital and given medications. She returned home but soon became violent. Two days later she was taken to a private psychiatric hospital, treated for nine days, and returned home much better. Within a few weeks she returned to school. Wi’s father, a Javanese healer as well as schoolmaster, felt that some black magic from one of his patients must have been deflected from him to his daughter. Her mother contends that an extended family member who held a grudge over a land deal had sent black magic and attacked her. Wi, however, told the psychiatrist on our team simply, “I have a mental illness!” For several months Wi insisted to us that she experienced no more spirits. However, she finally confessed that she continuously saw two spirits, the man in orange and a woman in green, speaking with each other. Despite this, she was able to continue school, where the other children knew she could hear spirits and would ask what they were saying. She had friends, passed her classes, and showed relatively little impairment. She has continued to take medications since she became ill, at her mother’s insistence. Over time her performance in school, however, declined. She failed the high school graduation examination, which prevents her from entering nursing school. She recently enrolled in a school to train teachers.

Case 6 Mbak Arti—Traumatic onset, unremitting illness At age twelve, in 1999, Arti returned home from school one day to learn that her mother had just been killed. Her parents had been riding their bicycles to market when the mother was hit by a passing truck. Within two days, Arti began having what in retrospect may have been symptoms of illness. She refused to go to school, slept a lot, became quiet and withdrawn, seemed to be daydreaming, and refused to eat or bathe. At the one hundredth–day ceremony



commemorating her mother’s death, Sri suddenly became acutely psychotic. She became confused, began screaming, wandering around aimlessly, laughing and talking to herself, and complained of seeing pocong, a kind of ghost wrapped in a burial shroud. This began a long process of unremitting psychosis. Arti’s elderly father took her to healers around the village, but it was not until December 2000, eighteen months after her initial symptoms, that he took her to a public mental hospital, where she stayed for twelve days. Upon her release she refused her medications, so her father placed her in a pesantren, an Islamic boarding school that also houses persons with mental illness, where she remained for several months. In July 2001, Arti became violent and was again admitted to a hospital, first for five weeks, then for six months more. She returned home, still psychotic, wandered around the village, would disappear for periods of time, and at one point came home pregnant. Her child was delivered by a village midwife, with Arti appearing not to understand what was happening to her. The child was taken by a member of the community. Arti’s father and sister accept her illness as a kind of “fate.” They try to remain patient and supportive, but her condition has deteriorated and she often disappears. Arti can no longer consent to participate in the study.

Case 7 Mbak Sari—Gradual onset, continuous illness with severe impairment Sari is the second of four siblings in a highly educated family living at the edge of Yogya. Her father taught in a local university before he died in 1987 (when Sari was fifteen). Sari graduated from an accounting academy, and several years after graduating began working for an international company in sales. After the company relocated her to another city, Sari began to find work difficult and her friends convinced her to return home. Her sister reported that Sari soon asked to change bedrooms, complaining that hers was like a graveyard. This was the first indication that something was wrong. Four months later, in November 2000, Sari became overtly psychotic. She began talking and laughing to herself, began seeing multiples of her mother, claimed that she was Lady Di, felt like she was God so that it was not necessary to do her regular prayers, and began to claim that the family house was her office and that she was a worker for the company in this house. She was taken to a psychologist, a general hospital, and then a private psychiatrist who treated her with ECT and put her on firstgeneration antipsychotic medications. She returned home somewhat better and began actively applying for work. Although her hallucinations appeared to stop, she developed strong negative symptoms: limited speech and emotional withdrawal. Her mother and siblings were quite critical of her, considering her lazy. In September 2001, Sari stopped taking her medication and became acutely psychotic again. She later resumed medication and has continued to take medications ever since. Over time, she has developed an active imaginary world. She reports being a “career” woman, working in her office or selling handicrafts, and



says her real problem is that she is tired from overwork. Occasionally she sees her (deceased) father come into the kitchen. She says she has been struck with black magic, but that she has been treated by a healer who has monkeys who circle her house and protect her. Overall, her mother has lost hope and worries most deeply about whether any of her siblings will care for her daughter when she is no longer able to do so. She wonders if she would be better staying long term in a hospital.

Case 8 Mbak Ismi—Gradual onset, unremitting illness, severe impairment Ismi is the second of two daughters in a poor family living in a village outside the city of Yogyakarta. Her father is an agricultural laborer; her mother peddles small food items. From the time she was young, Ismi was quiet, withdrawn, and of below average intelligence. She failed to advance in school three times. At age seventeen, in middle school, other children began to tease her, called her “water buffalo,” and joked that she was pregnant. When she asked her parents to enter a different school, they refused, so Ismi stopped attending. In March of 2000, at the time she was having difficulties in school, Ismi became very quiet, sometimes cried, and felt afraid. Her sister describes these symptoms as having begun after a stone fell into their house with a loud noise at night, while Ismi was asleep. A week later, while taking a bath, she suddenly began to cry and scream and became confused. Her symptoms worsened over time. She laughed and talked to herself. She heard voices. She saw pocong, the dead wrapped in shrouds, floating about. She became more emotionally withdrawn and stopped taking care of herself. Finally, after almost a year, and after several traditional healers had failed to help, her family took her to a psychiatric hospital in February 2001. After a brief improvement, she became worse again, refusing to eat and bathe, and was rehospitalized in 2003. When she returned home after a month, she twice “fell” (jumped?) into the well, the second time at the order of her voices, and was returned to the hospital. Her illness has continued to worsen. She becomes violent and sometimes wanders about aimlessly. She hears people talking about her, calling her names, and commanding her to harm herself. She watches television to make the voices go away. She has little energy. Increasingly her father feels hopeless, particularly after a nurse suggested that she could not be helped. When Ismi becomes out of control, she is now locked in a room behind the house or kept in restraints.

Analytic Observations Many of the cases described here would be quite familiar to psychiatrists anywhere. The basic symptoms of psychosis, described in clinical terms—hallucinations, delusions, ideas of reference, paranoid ideation, negative symptoms, neurocognitive deficits—are present in nearly all of these cases.



While useful in terms of clinical description, these terms hide what is distinctive about psychotic experience in Java clinically, culturally, and in terms of social experience. Indeed, when described in these clinical terms, the most critical cultural features of psychotic illness that vary across societies and across individuals within societies disappear almost entirely. How then might we describe these cases in ways that highlight important clinical and cultural features that are significant and raise questions about the classic descriptions of schizophrenia or psychotic illness?

General Characteristics of the Experience and Treatment of Psychotic Illness in Java Several common characteristics of these cases, which may seem unremarkable to Indonesian psychiatrists precisely because they are so typical of psychotic illness in Java, can be noted. First, psychotic experience in Yogyakarta is rooted in a local cultural and religious lifeworld. The Javanese lifeworld is a world of spiritual forces, of practices aimed at enhancing the inner power (tenaga dalam, kekuatan batin) of individuals in ways that protect them from dangerous or malicious forces, of negotiations between seen and unseen worlds, and of the use of the unseen world with its spirits and energies both for good and for ill toward other persons. This is true of the classical prijaji world linked to Hindu-Buddhist traditions, the abangan world of local spirit practices, and the Islamic (or santri) world that incorporates meditative practices through Sufism and includes local spirits in the Islamic cosmology (Anderson 1972; Ferzacca 2001; Geertz 1960; Keeler 1987). It is also true of the eclectic world of Christians and other minority religious groups, diverse student political and religious groups, and healing traditions that lend Yogyakarta a kind of postmodern air. Psychotic experience places individuals into direct contact with this unseen, spiritual world. Thus these cases are filled with stories of persons coming into contact with deceased relatives or their ghosts, with well-known types of local spirits or ghostly forms (butoijo, pocong), with mighty spirits such as the Queen of the South Sea (Ratu Kidul) or the spirit of the Sultan of Yogyakarta, and with the forces of black magic sent their way by someone wishing them harm. Some of these spiritual entities are seen and heard directly by persons who are ill; others are suspected as the cause of the illness. Virtually all of these spiritual forces are part of the everyday lifeworld of persons surrounding the patient and are taken seriously. Javanese are not considered “crazy” simply because they “believe” that they see a ghost or spirit. And care-seeking for psychotic illness almost always includes resort to healers to investigate the role of the unseen world in the illness and seek redress, prior to or concurrent with seeking medical care. Second, in a majority of these cases, the onset of the psychosis was very sudden and dramatic. Most describe virtually no prodrome, no period of slowly increasing symptoms and social dysfunction generally believed typical of the early phases of schizophrenia. The narratives of onset in this and our other



studies are consistent with cultural understandings of being struck by a spirit. This has long made our research team suspicious that the cultural pattern influencing the story of how the illness suddenly began might hide evidence of previous symptoms of illness. However, intensive interviewing with these individuals and their families, continued over a number of years, gave us the opportunity to explore this possibility. In some cases, retrospective interviewing makes it impossible to be sure (e.g., did Arti [case 6] develop psychotic symptoms during the one hundred days following the death of her mother when she was grieving and refusing to go to school, before the sudden eruption of acute symptoms?). In most cases, however, we feel confident that the narratives are accurate in describing the illness as occurring suddenly with few prior signs. If we assume that Mbak Arti developed her psychotic symptoms prior to the one hundredth– day ceremony following her mother’s death (and therefore was not a “rapid” onset psychosis), five of the eight cases have very acute onset, a clinical picture quite different from what would be expected from North American samples. Third, drug and alcohol use are not prominent in these stories. Only in the case of Mas Tri (case 2) is there evidence of marijuana and alcohol use prior to the onset of illness, and in no cases are there reports of drug or alcohol use to “self-medicate” for the illness. Again, this contrasts sharply with American, European, and Australian samples. Fourth, all eight of these individuals have lived at home with their parents and siblings following the onset of the illness. Only Arti has spent periods of time essentially homeless, wandering around local villages and even living on the streets of more distant cities in Central Java, with her elderly father unable to control her. The care of these individuals, as with the vast majority of persons with long-term psychotic illness in Indonesia, is primarily provided by family members. Relatively few persons are confined in large psychiatric institutions for much of their lives, as is true in many parts of East Asia. Some family settings, however, as described in the cases of Sur (case 4) and Ismi (case 8), can be considered quasi-institutional, in that the individual is essentially confined to a single room with minimal care, with the family expressing a loss of hope akin to that of more classic psychiatric asylums. Finally, the general pattern of medical care described in these cases is typical of those parts of Java in which there are a reasonable number of psychiatrists and psychiatric facilities.4 The most rapid, acute onset cases tend to be taken to medical care quickly. Whether in hospitals or private clinics, individuals are treated with standard antipsychotic medications, primarily first-generation drugs, and many receive ECT. Inpatient treatment is often as short as seven to ten days in private facilities or the university hospital, and as much as three months in the public hospitals. It is common that individuals stop taking medications as soon as symptoms decline, in many cases followed by relapse. If the illness continues over long periods of time, the family may continue to fill old prescriptions, using quite low doses of medications, often focusing primarily on



the ability of the patient to sleep. The ill person may not be returned to see a doctor for years, and after several years of illness families seem to lose all hope that an alternative medication or dosage could make a difference. There are essentially no psychosocial or rehabilitation services for persons with major mental illness and no consumer support services.

A Longitudinal View of the Course and Experience of Psychotic Illness Having said that there are general patterns that distinguish schizophreniaspectrum illnesses—clinically and culturally—in Java, it is important to return to the questions about whether there is a single, dominant pattern of chronicity and degeneration associated with psychotic illness and whether there are significant variations in the longer-term course of psychotic illness. When viewed in the first weeks of the illness, many of these cases appeared quite similar, even though specific features of the stories varied. However, when viewed longitudinally, greater heterogeneity appears in the course and experience of illness. LONGITUDINA L COUR SE: IS THER E A SINGLE COUR SE FOR SCHIZOPHR ENI ASPECTRUM PSYCHOSIS? Examining these cases visually makes it obvious that

there is no single, dominant pattern of illness course. One individual had a single episode, followed by complete recovery. Two have had two and four episodes respectively, with some disability but no apparent psychotic symptoms outside of the relatively brief episodes. Five persons have suffered long-term psychotic symptoms, without complete remission. One of these five has relatively limited symptoms and is quite high functioning. These findings are not unique. As mentioned earlier, long-term studies following persons with diagnoses of schizophrenia for more than twenty years have found similar heterogeneity. Luc Ciompi (1980), in a retrospective study of 289 elderly persons (mean age over seventy-five years) diagnosed with schizophrenia and hospitalized in Lausanne, Switzerland, provided a schematic representation of eight course types based on onset (acute versus chronic), course type (simple versus undulating), and “end state” (recovery or mild versus moderate or severe), showing that the 289 persons were distributed across these course types. Courtney Harding (1988) demonstrated that her long-term follow-up study of 269 persons previously hospitalized in Vermont State Hospital and Manfred Bleuler’s (1978) prospective study of 208 subjects hospitalized in the Burghölzli Hospital in Zurich, Switzerland, were also well distributed across these types. Our cases, described earlier, are also distributed across these types. Harding’s analysis demonstrates that across these three long-term studies, 50 to 66 percent of the former patients had achieved “recovery” or “mild impairment” more than twenty years after their initial illness. Our study, following these eight persons for only six years, found three of eight persons recovered or with mild impairment. What is interesting is that none of these



studies look in detail at how specific social processes in local social environments may contribute to different courses of illness, and how individuals experience these very different forms of psychotic illness. We will return to this issue later. EFFECTS OF T Y PE OF ONSET ON COUR SE: A R E ACUTE ONSET ILLNESSES BR IEF IN DUR ATION? Nearly all clinicians and most schizophrenia researchers believe

that very acute onset is associated with better prognosis for psychotic illness, raising questions about whether rapid onset illnesses are “reactive” or “psychogenic” rather than “functional” or “organic.” It has been difficult to maintain these categories, since nearly all psychoses seem to respond to stressful events and to include both psychological and organic qualities. DSM III (American Psychiatric Association 1980) used the category “brief reactive psychosis,” requiring that the onset of psychosis occurs “immediately following a recognizable psychosocial stressor.” DSM IV (American Psychiatric Association 1994) created the more general category “brief psychotic disorder,” denoting those with or without marked stressors. Both categories assume that rapid onset and short duration go together. In general, there is little empirical evidence supporting the criteria used to define either of these disorders or the ICD-10’s category “Acute and Transient Psychosis” (Good 2005). There is some empirical evidence that rapid onset is associated with better outcome, even in long-term psychotic disorders. For example, in the data on course types reported earlier, Ciompi’s data show that “recovery or mild” outcomes are found in 60 percent of the cases with acute onset and only 40 percent of the cases with chronic onset. In Harding’s cases, “recovery or mild” outcomes are found in 63 percent of cases with acute onset compared with 38 percent for those with chronic onset. We of course cannot test a hypothesis with eight cases, but we can indicate whether our cases are or are not consistent with the hypothesis that acute or rapid onset of illness is associated with better course of illness. In our eight cases, the three with slow onset have all led to continuous psychosis with severe impairment. Of the five cases with rapid onset, one had complete recovery, two have had brief episodes of psychosis with only mild residual symptoms between episodes (no positive psychotic symptoms), one (Wi) developed a long-term psychotic symptom (visual and auditory hallucinations) but with only moderate impairment, and one (Sur) recovered from her initial episode of illness but then had a relapse and has developed a continuous psychosis with severe impairment. These cases thus fit the hypothesis that acute onset illnesses tend to have better seven-year prognosis. It might be noted that there is little evidence of prodrome in the five rapid onset cases, and in none of these cases is there evidence of a significant psychosocial stressor—unless one considers the appearance of a terrifying spirit a stressor rather than a part of the illness.




A strong body of literature, dating back to the seminal work of Christine Vaughn and Julian Leff (1976) and George Brown (1985), suggests that the emotional climate in which a person with psychotic illness lives, particularly the family environment, has a powerful influence on whether the person will be able to remain in remission or suffer relapse. Janis Jenkins has played a critical role in linking this sociological/epidemiological tradition to anthropological studies of families, emotion, and psychotic illness (Jenkins 1991; Jenkins and Karno 1992). In particular, this literature has shown that high levels of critical comments by significant family members place the individual suffering schizophrenic illness at greater risk for relapse. This literature suggests risk for relapse owing to how negative expressed emotion interacts with medication use, reducing the effectiveness of medication in reducing risk for relapse and increasing the risk for relapse among persons who do not take medications (Brown et al. 1972; Karno et al. 1987; Vaughn and Leff 1976). The literature on Indonesian families suggests that maintaining harmony (rukun or “harmonious integration”) and avoiding overt conflict within the family is highly valued (Shiraishi 1997; Subandi 2006). This links to broader Javanese cultural values of being tentrem lahir (at peace in one’s outer social relationships) and tentrem batin (at peace in one’s inner subjective world), of being sabar (patient), nrimo (accepting of one’s destiny), and pasrah (surrendering to the will of God). These values all come into play when families are faced with the profound loss of a loved child developing a serious mental illness, and with the difficulties of caring for a son or daughter or sibling who develops acute psychotic episodes or the withdrawal and loss of motivation associated with the negative symptoms of schizophrenia. The presence of these values has suggested to Indonesian clinicians and researchers the possibility that levels of negative expressed emotions may be relatively low in Javanese families (Sukarto 2004; Ul Hasanat et al. 2004). Many of the Javanese families we have visited over the years use these terms explicitly in describing how they cope with a psychotic family member. On the other hand, any idea that one will see The Javanese Family (Geertz 1961) quickly disappears when visiting particular Javanese families, including those with a member suffering a psychotic illness. Not surprisingly, one finds enormous heterogeneity of families, and the stress and disappointment of a member developing mental illness produces varied responses. Among these eight cases, only two clearly expressed strong critical comments about, and sometimes directly to, the family member with the illness. The mother and sister of Sari at times expressed strong frustration toward her. The family is highly educated, an achievement requiring great effort given the death of the father in 1987. Early in our interviews, the mother referred to her daughter as goblok (stupid), a very derogatory term. It likely reflected a longtime



frustration in the family that this daughter was not able to attend an academic high school and go to the university but ended up in a technical school. At the same time, the mother expresses great sadness for Sari and worry about her future. Sari’s younger sister describes her as malas, a term that means “lazy” or “lacking in motivation.” This may have reflected not only Sari’s longtime style of being quiet and withdrawn but the negative symptoms that developed as well. It seems not unreasonable to interpret Sari’s fantasy that she is a “career woman,” that the house is her business office, and that she maintains a handicrafts business as a response in part to her family’s criticism of her being lazy and unproductive. Sur, the young woman who grew up with her grandparents, now lives with her father and mother. Her mother is very authoritarian, and both are highly critical of their daughter. Both speak mockingly of her in front of our interviewers, calling her too stupid to answer questions and openly suggesting that she is only pretending to be sick, even though she is obviously deeply impaired. The mother apparently sometimes strikes the daughter, and once cut her hair without her permission while she was asleep. She often intrudes and answers the questions we address to Sur. And the parents only buy the medications for their daughter sporadically, complaining of the cost and her not really being ill. The two cases in which the family is highly critical both have unremitting psychosis. Sur was in apparent recovery for nearly one year before she suffered a severe relapse. Of the six cases in which family members are generally positive and supportive, three have continuous psychotic symptoms, and three are recovered or have only rare psychotic episodes. The work on the family emotional climate and its influence on psychotic illness points in another direction as well. It has become clear, as our work has proceeded, that the concepts of stigma and negative expressed emotion are closely related. Critical comments within the family are a kind of internalization of stigma within the most intimate of social relationships. However, critical comments within other important social environments, often read as stigma, have a similar effect as negative expressed emotion. Thus, a comment by a member of Mas Tri’s intimate religious community, questioning whether he was fit to lead prayers, triggered a strong emotional reaction and relapse of his psychotic symptoms. Obviously stigma extends beyond interpersonal relations into institutional structures, but the two are interrelated concepts, and our data support the general argument that negative social environments can place individuals at risk for relapse and more severe and continuous illness. W H AT IS T H E R EL AT IONSH I P BE T W EEN C L INIC A L COU R SE A ND SO C I A L IMPA I R MEN T ? It may seem obvious that social impairment is closely related

to levels and types of psychotic symptoms, with increased levels of symptoms producing increased levels of disability. It should be equally clear that the longitudinal “clinical course” of psychotic illness is distinct from its “social course,”



what Good, Good, and Burr (1983) once called the difference between the trajectory of disease and illness (Ware et al. 2007; Marchira et al. 2004 ; Ul Hasanat et al. 2004). Most “outcomes” research now focuses on variables such as quality of life, social functioning, disability, and occupational functioning, all in addition to clinical symptoms. And psychosocial interventions are critical determinants of recovery processes. If we are to understand recovery from psychotic illness across cultures and in different social environments, we will need to understand more deeply than we now do the interaction between social and cultural processes and the “disease” processes associated with schizophrenia, particularly the local processes that produce resilience as well as disability. In our present study, four of the cases have both high levels of clinical symptoms and high levels of disability. One of the cases shows full recovery from clinical symptoms and no disability, while another has mild negative symptoms and mild disability. Both of these match the predicted relationship between clinical symptoms and levels of disability through time. Two of the cases are somewhat counter to this prediction. Mas Tri has no psychotic symptoms but moderate levels of disability. Mbak Wi, on the other hand, has continued hallucinations but has been remarkably resilient, showing only mild impairment. It may be useful to examine cases that are counter to that which is expected if we are to understand processes of resilience and recovery. We close with brief observations of these two cases. Mas Tri has had four very short episodes of illness. Only during the first was he floridly psychotic, engaging in highly embarrassing public behaviors (going to the house of a girl in the neighborhood, partially clothed, calling for her loudly). This embarrassed him among his friends, as did the fact that he spent time as an inpatient in a psychiatric facility. After recovering from his initial psychotic episode, Mas Tri returned to work. However, not long after, he quit the job, indicating that he was worried he might fall ill again. Over the past six years, he has worked only intermittently, complaining that the jobs he can get are below that of his friends who graduated from the same school as he and that they are inappropriate for him. Clearly, the stigma associated with his having had psychotic episodes affects his willingness to work. At the same time, his unrealistic expectations and rather passive personality style, both of which are frustrating to his parents and siblings, inhibit his ability to resume the life he had as a younger man. Mbak Wi, on the other hand, has continuous psychotic symptoms. She has, however, insisted on continuing to go to school and has aspirations to develop a career, aspirations that seem not unreasonable. From the very earliest stages of her illness, Wi was able to return to school, maintain her close friendships, and function quite well. She and her mother reported that while the children knew that she could see and hear the two spirits speaking, they did not tease her about this but rather seemed intrigued. Perhaps this was in part because her father was a Javanese healer, even though he was also a schoolmaster. One of the



interpretations of her illness was that the spirits were sending her illness because they wanted her to take up the healing mission of her father. She, interestingly, insisted that her symptoms were a mental illness, not a calling to be a healer. Wi has been strongly supported by her family, particularly her mother, who closely monitors her health and her medications, and who supports her efforts at education but tries to prevent her from pursuing unrealistic goals. Her personality style is obsessive and perfectionist; one result is her ability to focus very narrowly on her schooling, screening out attention to the hallucinations. Over the six years, her impairment has increased modestly. She is still quite young, and it is not clear whether she will be able to complete her schooling, develop ongoing social relationships, get married, and follow a normal Javanese life course. However, to date she has been remarkably resilient in the face of continuous illness.

Conclusions We began this chapter questioning the model of schizophrenia and schizophrenia-spectrum psychotic illnesses as inevitably chronic and degenerative, a view inherited from Kraepelin and reinforced by the “clinician’s fallacy”—a commonsense view of clinicians that schizophrenia is inevitably chronic because most of their patients are those who return over and over again (Cohen and Cohen 1984; Harding et al. 1987a: 481). We reviewed the emergence of a new and more hopeful focus on the potential for recovery. And we asked how cross-cultural research can contribute to understanding what social factors may inhibit or contribute to recovery. Our primary argument has been that the classic, inherited model of schizophrenia provides a far too unitary model, one that is often reproduced even in anthropological research by describing the experience of psychosis too narrowly in terms of psychotic experience rather than examining how individuals and families live with the fluctuating qualities of psychotic illnesses over time. And we have argued that only by attending closely to the heterogeneity of psychotic illness, by understanding the nature and sources of that heterogeneity, can we as anthropologists, social scientists, and researchers contribute to efforts to develop mental health services more focused on recovery rather than simply managing psychotic symptoms. In the conclusion to this chapter, we indicate some critical dimensions of heterogeneity that deserve attention if we are to understand potential sources of resilience and ways that mental health services may build on natural processes of resilience and contribute to improving the lives of persons with psychotic illness.

Clinical and Biological Heterogeneity Although there is a long-standing hypothesis that “the schizophrenias” are a genetically heterogeneous collection of disorders, contemporary psychiatry



and neuroscience has made only modest progress in unraveling specific phenotypes of schizophrenic illness. What is clear is that schizophrenic illness consists of several clinical dimensions: reality distortion (including positive symptoms), disorganization of thought, deficit pathology (including negative symptoms), and neurocognitive pathology, with the possibility that depression may be an additional core dimension of schizophrenia rather than a secondary response to the illness. If anthropologists are going to contribute to serious discussions of the heterogeneity of psychotic illness, they will need to understand how these very different dimensions of illness may vary for individuals diagnosed with schizophrenia, producing very different patterns of illness and social functioning.

Cultural Heterogeneity It is equally true that describing illness in clinical language minimizes or obscures critical social and cultural processes that produce heterogeneity of experience and course. There is no alternative to rich ethnographic description if we are to understand the local worlds of psychotic illness and sources of both resilience and chronicity within these worlds. Linking of clinical research and ethnography remains an important research challenge.

Heterogeneity of Course This chapter has suggested the importance of long-term longitudinal research that links ethnographic, clinical, and epidemiological methods. Any effort to understand diversity of experience of psychotic illness, to address such questions as what factors improve long-term outcomes, requires longitudinal research. Courtney Harding’s work suggests that following persons with a psychotic illness into their late lives provides surprising evidence of unexpected recovery, suggesting that we should substitute the term “prolonged schizophrenia” for the term “chronic schizophrenia” and “brief or short-term schizophrenia” for the term “acute schizophrenia” (Harding et al. 1987a: 483). Finding ways to complement efforts to represent “clinical course” of such illness with better descriptions of “social course” are of particular importance.

Heterogeneity of Onset The emergence of an early psychosis movement within psychiatry, focused on better scientific understanding of the very earliest phases of psychotic illness and on developing appropriate “phase-specific” treatment for persons in the early phases of psychotic illness, provides an opportunity for anthropologists (Falloon et al. 1996; McGorry 1995; McGorry et al. 2000). There is virtually no systematic literature examining cultural heterogeneity in the early phases of first episode psychotic illness, social responses to the illness, and care-seeking activities. The very term onset remains relatively obscure and largely unproblematized, despite the fact that much psychiatric research depends on identifying



precisely when a psychotic illness began. Rich ethnographic analysis is needed to complement ongoing clinical and epidemiological research.

Psychological Heterogeneity So powerful have neurobiological understandings of psychotic illness become that real person-oriented understandings of the nature of psychosis are increasingly neglected. Anthropologists need to resist the tendency to essentialize schizophrenia, particularly given our experience that many persons suffering psychotic illness are not psychotic much of the time, that persons with very different personalities and personal lives suffer psychotic illnesses, and that understanding how individuals and families cope with psychosis requires understanding individuals psychologically, even when they suffer psychotic illness. Anthropologists need a far more nuanced understanding of the heterogeneity of psychotic illness if we are to contribute to efforts to improve care and to support individuals and families struggling to live with and recover from psychotic illness. NOTES Special thanks to the Javanese families who have met us many times over the years with great grace, allowing us to enter their intimate spaces to talk about difficult issues. Thanks to Ken Vickery for great help in editing the chapter. 1. This study identified 392 cases of first episode first contact psychosis in a six-month period, a treated incidence rate of 2.59 cases/10,000 population. 2. All research has been carried out following human studies procedures prescribed by the Institutional Review Boards of Harvard Medical School, Gadjah Mada University Faculty of Medicine, and the Indonesian hospitals whose patients we recruited for the study. 3. Mas is a term of address in Java for young or unmarried men or men with whom one is particularly intimate. Mbak is the similar term of address for women. All names have been altered to hide the identity of the individuals and families who have participated in this study. 4. The province of Yogyakarta has approximately thirty psychiatrists serving a population of three million people, lower than Jakarta but much higher than most parts of Indonesia.

4 VVVVVVVVVVV Male Infertility, Chronicity, and the Plight of Palestinian Men in Israel and Lebanon M A RC I A C . I N H O R N A N D DA P H N A B I R E N B AU M- C A R M E L I

Male infertility is a neglected reproductive health problem, yet it contributes

to at least half of all cases of subfertility worldwide (P. Chan 2007; Kim 2001).

Male infertility is often idiopathic, or of unknown cause; hence, it is recalcitrant to prevention and is among the most difficult forms of infertility to treat (Carrell et al. 2006; Devroey et al. 1998; Irvine 1998; Kamischke and Nieschlag 1998). So-called male factors in infertility include low sperm count (oligospermia), poor sperm motility (asthenospermia), defects of sperm morphology (teratozoospermia), and total absence of sperm in the ejaculate (azoospermia), the latter sometimes due to infection-induced obstructions of the epididymis. Male infertility is a health and social problem that remains deeply hidden, even in the West. Studies have shown it to be among the most stigmatizing of all male health conditions (Becker 2000, 2002; Gannon et al. 2004; Greil 1991; Inhorn 2004a; Lloyd 1996; Upton 2002). Such stigmatization is clearly related to issues of sexuality. Male infertility is popularly, although usually mistakenly, conflated with impotency, as both disrupt a man’s ability to impregnate a woman and to prove one’s virility, paternity, and manhood (Inhorn 2002, 2003a, 2003b, 2004a; Upton 2002; Webb and Daniluk 1999). Although little is known about the experience of male infertility worldwide, scattered reports show that male infertility, like female infertility, has profound effects on personhood, marriage, and community relations, particularly in pronatalist settings where all adults are expected to marry and produce offspring (Carmeli and Birenbaum-Carmeli 1994, 2000; Inhorn 2002, 2003b, 2004a; Upton 2002). Thus, male infertility is often a cause of profound human suffering, particularly in high-fertility societies where all men are expected to father offspring. For this reason alone, it is a global reproductive health problem of considerable significance. In the Middle East region, all adults are expected to marry and produce offspring; raising and nurturing children, especially sons, is a key component of a man’s patriarchal authority; and men who do not become family “patriarchs”




may be deemed weak and ineffective (Birenbaum-Carmeli et al. 1995; Carmeli and Birenbaum-Carmeli 1994, 2000; Ghoussoub and Sinclair-Webb 2000; Inhorn 2002, 2003b, 2004a; Lindisfarne 1994). In such a social climate, chronic, unresolved male infertility has far-reaching implications for the construction of masculinity, marital life, kinship, and community relations. In Euro-America, there is little difference in men’s and women’s rates of infertility: male infertility contributes to about 40 to 50 percent of all infertility cases. In the Middle East region, in contrast, male infertility appears to be considerably higher, with rates of 60 to 70 percent in infertility clinics there (Inhorn 2004a). This is partly an artifact of the lower rates of infertility among women compared with other settings, due to relatively low rates of sexually transmitted infections (STIs). But male infertility is also influenced by other factors in the region. Pesticides, lead, and other heavy metals are spermatotoxic; thus, ambient air pollution may contribute to male infertility (Inhorn et al., forthcoming-a; Hopkins et al. 2001). Heavy consumption of caffeine and tobacco by Middle Eastern men may also exert negative effects on male fertility (Curtis et al. 1997; Inhorn 1994; Kobeissi et al., forthcoming). Rare genetic sperm defects also appear to be responsible for many—perhaps most—male infertility cases, due to microdeletions on the Y chromosomes. Such genetic mutations are magnified through the consanguineous (cousin) marriage practices preferred among Muslim populations across the Middle Eastern region (Baccetti et al. 2001; Inhorn and Birenbaum-Carmeli, forthcoming; Inhorn et al., forthcoming-a, forthcoming-b, forthcoming-c; Latini et al. 2004). These genetic forms of male infertility tend to be very severe, to cluster in families, and to be untreatable (Baccetti et al. 2001), presenting as a chronic condition over the course of a man’s entire life. A variant of in vitro fertilization (IVF) known as intracytoplasmic sperm injection (ICSI) may assist severely infertile men to reproduce. Spermatozoa are injected directly into oocytes, effectively forcing fertilization to occur. As long as one viable spermatozoon can be retrieved from an infertile man’s body— sometimes through painful testicular aspirations and biopsies—ICSI can enable infertile men to father biogenetically related offspring. ICSI provides infertile Muslim men with their “only hope” to overcome their infertility, given the widespread Muslim prohibition on donor insemination and legal adoption (Clarke 2008; Inhorn 1996, 2003a; Meirow and Schenker 1997; Serour 1996; Sonbol 1995; Tremayne, forthcoming). However, ICSI is expensive and subsidized by only a few Middle Eastern Muslim states. Infertile Muslim couples must pay between $2,000 and $5,000 for one ICSI cycle, effectively restricting the technology to the middle and upper classes (Inhorn 2003a). In Israel, in contrast, the state funds IVF and ICSI services more comprehensively than any other country in the world, and Israel’s consumption rates per capita are therefore highest. This is partly because of the perceived centrality of reproduction for national survival and regeneration (Kahn 2000). IVF services



are provided in twenty-four IVF centers throughout the country at a rate of up to seven free cycles or until the live birth of two children (Kahn 2000). These services are extended to women of all marital statuses until they are forty-five years of age, or, if using donor oocytes, age fifty-one (Birenbaum-Carmeli and Carmeli, forthcoming). Although patients make a small financial investment to complete an ART cycle (e.g., minimal supplementary patient contributions, travel expenses, and days off work), universal state funding makes Israeli ART clientele more socioeconomically diverse than in most other countries. Although state funding is directed primarily toward the state’s Jewish population, treatment is also offered to and widely consumed by non-Jewish Israelis. Palestinian citizens living within Israel are therefore in a privileged position as the only Middle Eastern Muslim population with free access to IVF and ICSI. This is especially important, given that Israel’s minority populations are also highly pronatalist (partly as a reaction to Israel’s nationalist campaigns to outstrip Muslim birthrates) (Kanaaneh 2002). Childbearing is of paramount importance to Israel’s religious minorities, who, despite widespread access to family planning, have a relatively high average number of children per family: 4 in Muslim families, 2.6 in Druze families, and 2.14 in Christian families (Birenbaum-Carmeli and Carmeli, forthcoming; Kanaaneh 2002). However, the Israeli Palestinian population also suffers from high rates of male infertility—up to 60 to 70 percent of all couples seeking infertility treatment (director of the Haifa IVF center, personal communication, December 2007).

Palestinian Men and the Middle Eastern State Palestinian Citizens of Israel Despite infertile Palestinian men within Israel enjoying generous ART benefits, Palestinian men in Israel, as elsewhere in the Middle East, are deprived of many basic human rights. Israel’s Palestinians constitute a sizable minority population. Of Israel’s total population of seven million, 80 percent is Jewish and 17 percent is Palestinian Muslim (an additional 2 percent are Christian and 1 percent is Druze). Officially, the non-Jewish minorities are equal Israeli citizens. In practice, minority populations are subject to various sorts of formal and informal discrimination and restrictions on multiple levels.1 First, more than 260,000 Palestinians live within Israel as “internally displaced persons” (IDPs)—removed from their original homes and sometimes living in nearby “unregistered” villages that receive no government services (Slyomovics 1998). In the sphere of education, Israeli Palestinians have a higher student-to-teacher ratio, less equipped schools, insufficient vocational education, and lower achievement levels (Al-Haj 1995; Eisikovits 1997; Smooha 1989), and are underrepresented in higher education (Guri-Rosenblit 1996, 1999). In the labor market, technological professions are semiofficially blocked to Palestinians on grounds of state security. About two-thirds of Israeli Palestinians are



unskilled workers (Adva Center 2003); unemployment among Israeli Palestinians continues to soar (Mesch and Stier 1997); and income levels are significantly lower when compared to Jewish counterparts (Adva Center 2004). Another crucial point of difference is in the political realm. With the exception of Druze men, Israel’s other religious minorities are exempted from military service. Consequently, Israeli Palestinians are less exposed to the risks of military service than those faced by Israeli Jewish men. But this does not mean that Palestinians bypass the devastation of regional wars. For example, the 2006 summer war between Israel and Lebanon’s Hizbullah significantly affected the Palestinian population living in the northern regions of Israel, including the city of Haifa. In neighboring Lebanon, Palestinians living in refugee camps throughout the southern half of the country faced considerable death and destruction, yet were unable to flee to safer havens to escape the fighting.

Palestinian Refugees in Lebanon In the year 2003, the number of Palestinian refugees was estimated at 9.6million in total.2 The majority live within one hundred miles of the borders of Israel— more than half in Jordan, more than one-third in the West Bank and Gaza Strip, and about 15 percent equally distributed between Syria and Lebanon. Of these refugees, 3.8 million are registered with the United Nations Relief and Works Agency (UNRWA), which administers fifty-nine refugee camps throughout the West Bank, Gaza Strip, Jordan, Syria, and Lebanon. Since UNRWA refugees fall outside the jurisdiction of the UN High Commission for Refugees (UNHCR), they enjoy fewer protections than refugees elsewhere in the world. According to UNRWA, nearly four hundred thousand people are registered in Lebanon, where they now constitute approximately 10 percent of the total Lebanese population of 4.3 million.3 Yet, Lebanon is the host country deemed “least hospitable” to Palestinian refugees, and they have faced unique problems of reception since their arrival in 1948. For example, the “unruly” presence of the Palestinians—including the existence of the Palestine Liberation Organization (PLO) in Lebanese refugee camps—has been widely blamed by the Lebanese government and its citizens for the descent into fifteen years of civil war (1975 to 1990) (Inhorn and Kobeissi 2006; Said and Hitchens 2001). Palestinian refugees are still considered “foreigners” in Lebanon, even after living there for three generations (exactly sixty years, from 1948 to 2008). Palestinians are prohibited legally from working in more than seventy trades and professions, and so experience high rates of unemployment, limited access to educational facilities, and lack of access to government social services; social services are provided to them almost entirely by UNWRA. Although some educated Palestinian families who fled to Lebanon in 1948 have been able to maintain middle-class professional status, the vast majority remain poor and stateless, granted travel documents but not citizenship (Peteet 2005). Sons and daughters of middle-class Palestinian families in Lebanon often migrate to the Arab Gulf in search of employment,



but excepting Jordan, no Arab country has extended its citizenship privileges to this exiled population. In this chapter, we explore Palestinian men’s lives on both sides of this tense and conflict-ridden political border. We argue that, in many ways, infertile Palestinian men live lives of “quiet desperation,” especially when they face intractable infertility. Among Palestinians, infertility presents as a threat to early, normative childbearing. For men, male infertility leads to various forms of embodied suffering and social marginalization within their pronatalist social milieus. The situation is made much worse for Palestinian men in Lebanon by their complete lack of state rights and subsequent difficulties of accessing ARTs. While Israel subsidizes ARTs for all Palestinian citizens, Lebanon does not, leaving infertile Palestinian men in a very difficult position. Moreover, many of these men attribute their infertility to the chronic hardships of their lives, including exposure to multiple wars, injuries, refugeeism and exile, impoverishment, heavy and toxic labor, and depression. Palestinian men seeking treatment in Lebanon speak openly of their lack of basic human rights, not only in Lebanon, but as labor migrants in other countries. For them, infertility is symptomatic— indeed, the very manifestation—of their chronic condition of statelessness, oppression, and suffering. Chronicity, therefore, has multiple meanings—as a lived, embodied experience of infertility and its treatment and as a biographical, life-course disruption instantiating the larger political reality of chronic statelessness, oppression, lack of basic rights, and lives spent in exile.

Male Infertility as Symptomatic of Palestinian Suffering In this chapter, we explore male infertility as an understudied chronic condition, which (a) manifests in early adulthood, (b) is usually identified through diagnostic procedures occurring after marriage, (c) is generally incurable because of its genetic etiology, (d) must be solved through high-tech medical interventions that may or may not be accessible, and (e) when unresolved by these technologies, may manifest as a lifelong experience of reproductive impairment. Although male infertility is rarely classified as a chronic disease or even a disease per se (van Balen and Inhorn 2002), chronicity is a hallmark feature of male infertility. Among Palestinian men who have suffered throughout their lives, male infertility comes as yet another devastating blow to selfhood, social reproduction, and escape from misery. We draw on data from interviews with Palestinian men in four countries: Israel, Lebanon, the United Arab Emirates, and the United States. Together, more than thirty Palestinian men were interviewed in the four settings; here we focus on the thirteen men interviewed in Israel and the eleven men interviewed “across the border” in Lebanon. In Lebanon, interviews were conducted by Marcia C. Inhorn over eight months in 2003 (notably, during the U.S. invasion of Iraq), in two of the busiest and most successful IVF clinics in central Beirut. One was located in a large, private, university-based teaching



hospital and catered to a religiously mixed patient population of both Sunni and Shia Muslims, Christians of various sects, Druze, and various immigrant populations. The other was a private, stand-alone IVF clinic catering primarily to southern Lebanese Shia patients, but also Christian and Sunni Muslim patients from Lebanon, Syria, and the Palestinian refugee camps in Southern Lebanon. Between these two clinics, 220 Lebanese, Syrian, and Palestinian men were recruited into the study. One hundred twenty were infertile “cases,” and one hundred were fertile “controls” who were accompanying their infertile wives to the clinics. Of the eleven Palestinian men who were interviewed, seven were infertile themselves, and four were married to infertile women. The major theme of the interviews in Lebanon—although less so in Israel— was the multiple forms of suffering that the men had endured as Palestinians who had lived through or were currently living in a state of perpetual hardship and suffering. All eleven men interviewed in Lebanon had suffered major, lifechanging events, including political violence tied to the Lebanese civil war and the First Gulf War in Kuwait. In all cases but one, these men were born in Lebanon following the flight of their parents to refugee camps there or to Beirut in the case of some middle-class families. In all cases but one, they were forced to live through—or to flee from—the fifteen-year Lebanese civil war, which enveloped the country and led to the blaming and victimization of Palestinians, especially Palestinian men (Makdisi 1999; Said and Hitchens 2001; Tessler 1994). All of the men who stayed in Lebanon during the civil war were either injured and hospitalized, had family members who were injured or killed, lived in bomb shelters through periods of heavy bombardment, or were forced to flee their homes at various periods throughout the war. Two of the men were living in Ein el-Hilweh refugee camp in southern Lebanon when the war broke out (where they remain today). Neither was able to exit the camps or the country during the civil war, so they stayed and were caught up in the fighting (in both cases for Fatah, the military wing of the PLO). Both were severely injured, one remaining in an UNWRA hospital for six months. His home was also leveled in an Israeli bombing campaign. The parents of seven of the men eventually sent them out of the country, or fled together as families to safe havens, in the course of the war. However, in two cases, men suffered further violence in the “host” countries. One man living in Kuwait with his two brothers was brutally beaten (including in the genitals) by a gang of angry Kuwaitis, who scapegoated the Palestinians during the First Gulf War (when the PLO sided with Saddam Hussein against the U.S.-led coalition). In another case, a young man was sent by his middle-class family to the United States to pursue an engineering degree; he was brutally beaten by a gang of Italian youths who discovered he was Palestinian and kicked him so hard in the genital region that he has suffered from impotence problems ever since. Violence was therefore a part of virtually every narrative among the Palestinian men interviewed in Lebanon. In most cases, men linked this violence to



the etiology of their male infertility. The most commonly cited reason for male infertility, not only by the Palestinian men but the Lebanese men as well, was il harb, “the war.” Many men believed that their infertility somehow stemmed from their experiences of war, including the injuries they had sustained from bullets, shrapnel, and genital torture; the stresses and fears caused by living through war, loss of homes, and economic impoverishment; and the toxins to which they were probably exposed through bombing and the dumping of toxic wastes. For some men, especially those living in refugee camps, the violence endured until 2000, with the Israeli occupation of southern Lebanon and the imprisonment of thousands of Palestinian and Lebanese men. (It likely resumed for them during the 2006 Israel–Lebanon summer war, which occurred after the present study was conducted.) At the time of this study in 2003, four men continued to live outside Lebanon, but had returned to Beirut for ART services. Three had returned to Lebanon permanently following war-related exile. Many had mixed feelings about their lives back in Lebanon, but remained there because of family ties and lack of other life options. All but one of these men in were heavy smokers (one-half to three packs per day), but none tied their smoking to their infertility problems. Rather, they deemed smoking to be their major form of relief from chronic stress, tension, and “bad psychological states.” Expressions of depression were frequent in the interviews. One man described his life as “taking a camel on my back.” Another very poor man—wearing dirty, threadbare clothing to the clinic and living in a refugee camp throughout his life—said that he drank a bottle of whisky a day, even though alcohol is prohibited by his religion, “just when I’m in a bad mood.” He admitted that his “bad mood” occurred frequently, with “stress every day” due to unemployment, poverty, and fifteen years of childless marriage. He added, “No one is happy in this life. Personally, I’ve never been relieved in my life.” When asked why he thought he was infertile, another very depressed Palestinian man stated: Maybe, I think it’s the stress, the exposure to gases in the type of work [manual labor] I do, the exposure to the sun. I think maybe the work is the most important; the work is stressful. But also it’s from too much thinking—the politics, the situation. I think too much about the stability; there is nothing stable for the Palestinians in the Middle East. I’m watching the news, seeing the Palestinians, the suffering. It’s a lot of stress. It’s not only the economic situation, but the lack of stability and having to move from one country to another.

Male Infertility, Masculinity, and Biographical Disruption Although Palestinian men in Lebanon were much more likely to tie their infertility to the hardships of being Palestinian in a hostile world, most men in both



Israel and Lebanon viewed male infertility itself as a major life disruption. In their view, being infertile had created a situation of significant diversion from a “normal” life trajectory. Generally, these men had expected to marry and have children in their twenties. Delayed marriage and childbearing and “late” parenthood were not valorized, even for men pursuing professional careers. Thus, infertility resulted in a sense of asynchronization, of life lived off schedule and out of time. Being “off schedule” served to materialize their reproductive impairments, setting them apart from peers, and demonstrating the gap between their ruptured biographies and the normal (Palestinian) life course. In the words of one thirty-year-old Palestinian man in Israel, who had been in treatment for his infertility for more than five years: I’m not young; I’m thirty. When my son is twenty, I’ll be fifty already, at least. When will I build his house? We don’t rent a house the way you do. We purchase land and build. It takes a lot of time, a lot of money. And nobody knows what’s in store for him. You only live once. You start out as a little child, and when you grow up, you marry and want to have children. You prepare for this all your life, but now I’m not young anymore.

An even stronger sense of asynchronization imbued the narrative of a Palestinian man, age forty-four, who was living in a midsize village in Israel’s heavily Muslim Galilee region. Having divorced and remarried in order to have children, he reflected on his previous marriage and childless life: I am forty-four today. Some of my schoolmates are already grandfathers. You know, we marry early, at nineteen, twenty. So if someone has a daughter of twenty-four, who has married at eighteen, nineteen, today he’s a grandfather. Some [children] go to the university. And I was the first one to marry among my friends. I was twenty. So sometimes I have these thoughts, about those two kids, the two miscarriages we had [in his first marriage]. They should have been twenty, twenty-one today. And it’s great, it’s fun, you know, a man of forty-four who has children of twentyone. It’s a joy.

Local context is of great significance. Palestinians in Israel are likely to marry much earlier than Palestinians in Lebanon, who have faced demographic shifts and delayed childbearing as a result of the long civil war (Kobeissi et al., forthcoming). One man in Lebanon, who had spent twelve of the war years in Kuwait and had then traveled to Europe to study, had adopted somewhat different views about marriage and family life as a result of his life outside Lebanon. He did not marry until age forty, and instead of taking a much younger, highly fertile wife (the common course), he decided to marry an otherwise unmarriageable relative, who was living in Lebanon. He knew that at age thirty-nine, with a mentally retarded sister, she would have few other suitors. Although he married her out of compassion rather than love,



he had learned to love her over four years of difficult treatment and ongoing childlessness, as he explained: From the beginning of marriage, I made it clear to my wife—before marriage—that we could adopt a child, because we married at an older age, and this shouldn’t affect our marriage or our life. I think in the long run, my wife will ultimately be affected if we don’t find a solution, because, by nature, the wife is much more emotional than the husband. I mean, it’s affecting her personhood [sic]. She feels inferiority, that something’s lacking, and she feels down, depressed. Despite the fact that I told her that having our own children doesn’t matter, I’m sure, ultimately, that it will affect her. Two times, when the operation [IVF] failed, she felt depressed and cried. I tried to ease her pain and tell her that it doesn’t succeed from the first operation. We’re both old, and because of our age, our chances are less. So now, we’re both trying to sort it out [their mutual infertility problems].

Both this man and his wife were working as teachers in UNWRA schools in Lebanon, and were exposed on a daily basis to many Palestinian refugee children, including orphans. Unusual among the men in this study, this man had contemplated adopting an orphaned child: As for adoption, yes, why not? I thought about this. So even though you raise a kid who is not originally your kid, with time, he’ll get used to you and you to him, and he will be like your kid. But she’s not supporting this idea. She prefers to have her own kid. But I think, in the long run, if I had to adopt, eventually we would get used to it and we would treat the child as our own. She would feel the motherly affection, and I think it’s a good idea, a humanitarian act. A human being is a human being. And I love children—any child. I can, I think, feel pleasure to have any child. Sometimes I feel myself a father of any child. I can play with him, talk with him; most of the children love me.

As noted earlier, however, legal adoption is not an option for most Muslim men, who follow the religious guidelines prohibiting this practice (Bargach 2002; Clarke 2008; Inhorn 2006a; Sonbol 1995), and so was not a viable solution to childlessness for infertile Palestinian men in this study. To repair an infertile biography and to achieve full adult personhood, a Palestinian man must achieve biological fatherhood through the impregnation of his wife. The inability to impregnate one’s wife created threats to masculinity for men in this study, on both a personal and community level. A Palestinian man living in Lebanon remarked: Sometimes I do, I do ask this question, “Why me?” “Why am I not like other men?” But I’m a believer in God. And I’m trying. I tried so many



medications, so many treatments. And it’s depressing, yes. Since 1993, when I started to see doctors, this is a long time. I feel guilt toward my wife. She wants to have a baby. Before, I didn’t, I wasn’t as much like her, I wasn’t wanting a child so much. But now I’m starting to think about this. I love kids, yes. I love them. And, for the future, they will take care of my wife and me, later in life.

This man’s comments are telling. First, his infertility has clearly impinged upon his masculinity, although he is reluctant to admit it, because to do so is to question God’s wisdom. Second, his infertility has been chronic and has thrust him into a decade of unsuccessful treatment-seeking. During this time, his wife has desperately wanted a child, suffering her own “courtesy” life-course disruption, for which he feels very guilty. Although initially denying his own fatherhood feelings in the early part of his marriage, he has developed his own need for children. He also worries about the future life course in a society with few social safety nets. In short, childlessness has caused chronic suffering and biographical disruptions for both this man and his wife.

Male Infertility and the Burden of Secrecy When a Middle Eastern man is infertile, his wife is usually expected to quietly accept the situation, and even assume the blame for the reproductive failure in public (Inhorn 2003a, 2003b, 2004a). A Palestinian man living in Dubai, who had traveled back to Beirut for treatment, had a great deal to say about this injustice: When I was married, I went to a doctor, and he was all secretive. I told him, “Why must it be secret? I’m not shy about it. It’s a sickness, and I’m looking for treatment.” I wouldn’t do like other men [do]. They say it’s a problem with their wives. I wouldn’t do this. I say it’s from me, and I have to go for treatment. But in the Middle East, for a man to go to a doctor [for infertility], they feel like he’s not a man anymore, and they always blame the woman. My wife, she would tell other people, “No, it is not from him, it’s from me,” so that I don’t feel hurt. But then she found out there’s nothing wrong with her, so why should she do this? Men’s exams are much less [invasive] than women’s, so men should pursue it. But Palestinian, Jordanian men, they think it affects their manhood. But I and my wife are the same. A man is like a woman, there’s no difference. She can get sick, and I can get sick. It’s just a disease. So I tell people it’s from me. But, on the contrary, other [men] will say [to me], “I’m a man because I have children. If you don’t have a child, you’re not a man.”

As is clear from this man’s statement, male infertility is considered to be emasculating and stigmatizing—a real threat to manhood. As a result, many



Middle Eastern men refuse to reveal their condition in public (Inhorn and Birenbaum-Carmeli, forthcoming). Male infertility is shrouded in secrecy, leading to multiple problems of disclosure. Yet, this secrecy is not invariant, and as male infertility is becoming “medicalized,” there seems to be a normalization process occurring, particularly in the decade since ICSI was introduced in the Middle East. In the Lebanese study, men acknowledged increasing openness about male infertility these days, particularly in light of the modern infertility treatment services being provided and advertised widely in the country. Furthermore, once inside treatment centers, men were beginning to accept that male infertility is a medical problem, “like any other medical condition.” Thus, male infertility is not necessarily the major crisis of masculinity that it used to be. Having said this, the men in this study in both Lebanon and Israel exhibited a wide range of communication patterns, ranging from full disclosure and close sharing of treatment details to complete concealment and secrecy. A significant number of men in both countries had consulted relatives and friends to obtain treatment advice and the names of good infertility specialists. In some families, close relatives took an even more active role by escorting the couple to the clinic, donating money for treatment, or caring for the wife after an ICSI cycle was completed. Other men preferred to avoid intimate sharing of their cases, and limited their communication with family members; they explained that they were “receiving treatment,” but would not divulge the timeline or technical details. In general, secrecy was still the norm, with men hiding the fact of their treatment from their family, friends, and colleagues. In both countries, men invested a great deal of energy in deciding whether or not, and to what extent, to share information about their male infertility and its treatment within their social surroundings. One Israeli Palestinian man seemed horrified by the thought of telling his parents and in-laws about his male infertility. Aged thirty-three and married for six years (five of those years in treatment), this religious Muslim construction worker explained, “Wouldn’t cross our minds to tell the family! When they ask, we say ‘Allah akbar’ [God is great].” Another man, a more highly educated computer technician, aged twenty-eight and married for just two years, described how he and his wife, a teacher, kept “gaining time,” telling their parents that they were delaying childbearing in order to establish themselves professionally. This man added that both he and his wife were concerned that the parents might accuse the other spouse of the problem, so they preferred to conceal the infertility. Even a letter from a gynecologist, which his mother had found, did not lead him to greater disclosure of his male infertility problem. “We decided to keep it all secret, and we don’t update anyone. Today, for instance, no one knows we’re here at all. I prefer to do it quietly. ‘Quiet water runs deep’ is the saying, right?” A third Israeli Palestinian man rationalized the secrecy through his wish to spare his wife of all sorts of “comfort visits,” which only result in “the [visitors’] children making such a mess that she [his wife] then has to tidy up when she has no power.”



Secrecy was even more important outside of the family, in relation to friends and colleagues. With the exception of one man who said he shared treatment information with his friends, all other Israeli Palestinians described the treatment as “a very personal thing” and preferred to keep it a secret. One of these men described how he proactively obstructed any “probing” by his acquaintances: Two days ago, we went out with friends. And there’s another couple that wants to go to treatment so they asked us. I explained, but not “from ourselves.” I said: “According to what I read in the books, they recommend so and so.” I talk as an educated man without revealing that I’m undergoing the process myself.

A thirty-three-year-old bus driver, married for four years, attributed his concealment to the expectations of being hurt by commentary and gossip: It’s difficult for her anyway, and then people around say [to me], “It’s because you didn’t sleep enough, you were working too hard, you don’t really want children.” And people gossip. It’s harder for her than for me.

While all Israeli Palestinians in the study had confided in their supervisors, primarily in order to be granted days off for clinic visits, all had kept the infertility and treatment secret from their colleagues. Even when presented with a direct question—namely, “What did you talk about so privately with the boss?”— one man in the study, a thirty-three-year-old bakery worker, carefully guarded his secret: “Of course, I invented something completely different. It’s none of their business, the things I’m going through at home.”

Male Infertility and the Travails of Treatment One reason why Palestinian men may prefer not to disclose their infertility or its treatment is that treatment itself may be stigmatized. In the Middle East, IVF and ICSI retain a “technological stigma” as a morally dubious way to make a baby (Inhorn 2003a). Even though all branches of Islam consider IVF and ICSI to be permissible forms of treatment—as long as they are performed using a husband’s sperm and a wife’s eggs—lingering suspicions continue about laboratory mix-ups or immoral doctors intentionally mixing sperm. As a result, infertile Middle Eastern Muslim men often worry about these eventualities, or at least about what people might be thinking. As one Palestinian man living in Lebanon explained it: I won’t tell anyone, because the community here in Lebanon, they don’t let you go without asking something like this: “Isn’t it haram [religiously prohibited]? What’s that!” And they will look at you differently. I know that here in [named] hospital, they do it perfectly. But we heard that at so



many other hospitals, there are so many problems like that [i.e., sperm mixing]. But here at [named] hospital, it’s perfect.

Despite these anxieties, all men in this study were attempting to overcome their infertility via biomedical treatment, including through repeated trials of ICSI in some cases. The decision to pursue treatment was a central factor shaping their experience of infertility. Whereas in the past, male infertility was first and foremost a nonevent—a vacuum in one’s life that could not be overcome through therapy—today in the era of ICSI, male infertility has become a dense preoccupation, filled with biomedical intervention. ICSI has traveled globally, and has turned infertile men and their fertile wives into patients, regular visitors, and clients of the reproductive healthcare system. In short, at the dawn of the new millennium, ICSI has become a major factor shaping contemporary male infertility experiences across the globe. The key role that ICSI now plays in the very definition of male infertility was evident from our interviews. While male infertility is defined outside clinic walls by the perceived inability of a man to impregnate his wife, this definition changes radically once an infertile man steps into an IVF clinic, where a differentiated notion of male infertility comes into play. The concept of “degrees of severity” is immediately applied, in order to locate the patient along an impairment continuum. This graded perception of the severity of male infertility is thus wholly clinic generated and treatment related. Through the microscope in the IVF laboratory, experts examine sperm retrieved from semen—semen that is either masturbated into a plastic cup, retrieved from postcoital perforated condoms, or surgically removed directly from the testicles (Inhorn 2007b). The sperm are separated from semen through various spinning and washing techniques, then graded on the basis of numerous fertility-related factors, including count, movement, and shape. On the basis of this grading system, physicians make their treatment recommendations, including whether or not ICSI will succeed in a given case. Indeed, the grade of the impairment determines the type of treatment that will be proposed. Intrauterine insemination (IUI) using the husband’s sperm is generally recommended for less severe cases of male infertility. But, when this fails, a couple will be moved along to ICSI. Failing ICSI because of a severe sperm impairment is construed as much graver than failing IUI, because at that point, the only alternative is donor insemination (DI), which is religiously prohibited for Sunni Muslim men. Because all men but one were Sunni Muslims, DI was out of the question, and so they felt compelled to pursue ICSI once they learned of a severe sperm impairment. In the Lebanese study, five men were on their first cycle of ICSI at the time of the interview, but four had undergone repeated cycles of IVF or ICSI— three times in three cases and five times in one case. The “chronic” nature of their infertility was striking: Even though the eleven men in this group had been married an average of ten years—to cousins in five cases—they had yet to achieve



pregnancies after years of relentless “searching” marked by “chronic” sperm testing and hormonal treatment in some cases. Many had visited multiple doctors and undergone repeated semen analyses. But, because of lack of economic resources, poor medical advice, unsuccessful trials of IVF and ICSI, and the religious ban on DI, they had failed to achieve viable pregnancies with their own sperm.

Male Infertility, Reproductive Rights, and the Middle Eastern State There is significant dissatisfaction with the level of biomedical care for male infertility in Lebanon. Although Lebanese medicine is generally highly regarded in comparison to medical care in other Middle Eastern countries (e.g., neighboring Syria), men complained that Lebanese doctors are “greedy” and “commercial” and will mislead patients in order to make money. Unsavory mercantilism in medicine was a common refrain in the interviews, even among Lebanese citizens in the general male infertility study. Because Lebanon’s medical system is highly privatized, Lebanese physicians are steeped in fierce competition for patients in a small, resource-poor country, where patients may have difficulty paying for their services. Such is the case with infertility. Infertility medicine in Lebanon is an entirely private industry, with more than fifteen IVF clinics competing for patients (Clarke 2008). The Lebanese state—which is weak and politically divided—does nothing to regulate or subsidize infertility treatment services, meaning that patients must pay for diagnosis and treatment out of pocket. Without regulatory oversight, infertility services there may be suboptimal, even unethical in some cases. Men in particular are subject to negative competition. For example, most infertile men begin their treatment with urologists, who convince them to undergo an unnecessary genital surgery called “varicocelectomy.” Although Lebanese urologists often claim that varicocelectomy will necessarily restore a man’s impaired fertility, this surgery is overused and does little to improve sperm profiles in most infertile men (Inhorn 2007a). Several of the Palestinian men had undergone varicocelectomies in Lebanon—sometimes twice—without experiencing any improvement in their fertility profiles. Furthermore, in Lebanon, all of the men who had undergone ICSI had paid for it—sometimes dearly—given the high cost of this procedure. At the time of the study, a single cycle of ICSI cost between US$2,000 and US$5,000, including medications. The average annual income of the Palestinian men was only US$13,950 (excluding the one outlier who made US$84,000/year as a Central Asian medical equipment salesman). For the Palestinian men, one cycle of ICSI represented one-sixth to one-third of their annual income. For the two men living in refugee camps and earning only US$2,340/year and US$4,200/year (as a driver and a pipe fitter, respectively), ICSI represented a year’s worth of earnings, which they could ill afford.



Although most men complained about the high cost of treatment, none seemed to expect that the state would provide this service to them for free. Their experiences with the Lebanese state had been largely negative. They realized little, if anything, in the way of tangible benefits, and many of them had suffered considerably because of the state’s basic opposition to the Palestinians in its midst. Furthermore, these men longed to return to their families’ original homes in Palestine, but as Palestinians living in Lebanon, they had no right to enter Israel. (Lebanese citizens also cannot travel to Israel.) One educated Palestinian man summed up the situation quite poignantly: For me, I have a problem in shape [of the sperm] and the activity and the number. He [the doctor] told me, “After six months, if there is no solution, you will have to go to Beirut.” He said the only solution is ICSI. I had made IUI two times already, but both times the result was negative. After one year, my brother gave me the name of a new doctor in Syria, a very, very nice and good doctor. But he looked at all of our tests and he said, “You will have to go to in vitro.” But we have our jobs as teachers, and it is not easy to make [because of lack of money]. So we asked him to make IUI for us two times in Syria. The results were also negative. My friend in the school also has a problem like this, so he told me, “In Beirut, they have a good [IVF] center.” But I was afraid to go to the center because of the price. They told me it would be $4,000 to $5,000, which is very hard for me. And, of course, there is nothing to help me—nothing at all [no state subsidies or insurance]. Then I heard that the price in Syria is less, approximately $2,000. But another problem is traveling to Syria, which is hard for me. I have to sign different papers because I am Palestinian—entrance and exit papers. And we should enter [Syria from the Lebanese border] early in the morning. In the afternoon, we can’t go [across the border]. This is a big problem, a big problem. After fifty years [of Palestinian life in Lebanon], we still have problems. We have no human rights. I have the papers of my grandfather from our lands in Palestine. These were papers from the British consulate. But where are the rights? We’re from northern Palestine. But since 1948, we have no hope to go back. But I have hope, not for me, but for the next generation . . . [His green eyes welled up at this point, and so we shifted the interview to another subject.]

Ironically, for Palestinian men whose families did not leave in 1948 and who have ended up spending their lives in northern Israel, their Israeli citizenship confers upon them the right to state-subsidized medical treatment, including for male infertility. Israel is the only Middle Eastern nation-state that provides comprehensive, state-funded infertility treatment. Its state subsidization of IVF, ICSI, and other ARTs is the most generous in the world (Birenbaum-Carmeli and Dirnfeld 2007). Like all Jewish Israelis, Palestinian citizens of Israel are entitled to state funding for fertility treatments, which are guaranteed as part of their



civil rights. Indeed, infertility treatments—and health care in general—emerged from this study as one domain in which Israeli Palestinians feel that they receive equal and high-quality state services. Beyond their unanimous expressions of satisfaction with the Jewish medical staff (perhaps influenced by being interviewed by a Jewish woman), these men, as taxpayers, also expressed deep confidence in their civil entitlement to infertility services. When compared to the Palestinian men interviewed in Lebanon, Israel’s Palestinian residents sounded substantially more secure in their local political environment. As several men explained: The state owes me these things. I pay income tax; I have my duties and my rights. Not only I, generally, that’s the way it should be. It’s good that they give this money, but it’s my right. What do you mean? Of course, the state should pay! I pay taxes, national security, health tax, and this supplemental [private] insurance, and I’m entitled to what I’m entitled to. When I deposit money in a retirement fund, I’ll get my money when the day comes. It’s the same here: I pay health tax, and when I need, I deserve to get back. Why not? What I deserve, I deserve. This is certainly a thing the state should be giving, better than putting the money elsewhere, better than a missile that costs like a few treatments. Better invest in education, health, improve hospitals. Of course, the state should pay. I give everything. If I contribute to the state, then the state too should think about us . . . Who will the state think of if not us and our children?

Satisfied as they were with the local healthcare system, the men interviewed in Israel mistakenly assumed that Western countries provided even more generous infertility services. Probably owing to their ambivalent attitudes toward the Israeli state, most men normalized the Israeli healthcare system, and even downplayed it in comparison to the West: I think that in Europe, welfare states, as they are called, probably pay more, because here, they take all their ideas from them. Sometimes, when an MP wants to criticize a decision they say: “as they do in Europe.” I guess the standard of living is higher there, so I guess governments there pay. I’m exposed to European countries, and in Sweden and England, for instance, the state funds up to four children. I also read that in Germany you pay a flat rate but they promise you sixty embryos. That’s a lot, and they produce them in several aspirations, but they promise sixty embryos. But most European countries pay up to four children. In the U.S., some states do and others don’t.



I hear that in the States, they give everything, and in Europe. In Sweden they pay even for the medications, even the bus to the clinic they pay. I know. I have an uncle there. Sweden is something different.

Quite a few men chose to compare the local services to those provided in the neighboring Arab countries, and criticized the Arab states as being ungenerous in terms of reproductive healthcare provision of all kinds, including to the infertile: In Arab countries, if a woman wants to have a child she needs money. Here, it’s good that it’s free. If we look at our neighboring countries, then our service is good . . . Arab countries don’t give, I don’t think they do . . . It depends where you look. But in the Arab countries it’s probably worse. If they don’t look after their old people, would they care for the babies? They really suffer in comparison to us.

Ironically, given the fraught nature of the Palestinian relationship to the state of Israel, the politics of the provision of health care gains particular prominence in the case of infertility. Palestinian men, living as a marginalized minority group in the country, nonetheless receive generous services to help them overcome their infertility, a condition that afflicts a significant number of men in this community. These men view themselves as entitled to state services, given their civil participation as Israeli taxpayers,4 and compare themselves favorably in this regard to Palestinian men in the Arab countries.

Conclusion In this chapter, we have examined male infertility as a chronic condition and linked this condition to the chronic dilemmas of Palestinian life in the twentyfirst century. As we have argued, male infertility is a significant cause of physical and social suffering, which is tied, in the Palestinian case, to the material and symbolical violence that has afflicted this population over the past sixty years. For Palestinians in Lebanon—the Middle Eastern state that has been least sympathetic toward the Palestinian population in its midst—the experience of male infertility is tied to the war, injury, exile, and stress that are common themes of infertile men’s narratives. The disadvantage becomes more evident when compared to the reproductive healthcare services that are provided to Palestinian citizens of Israel. Although Israeli Palestinians, too, suffer from social marginalization and exclusion on a number of important levels, they are nonetheless provided with excellent, state-subsidized infertility care, to which they feel entitled as taxpaying



citizens. Although some have suggested that Israel’s attention is focused solely on making sure that Palestinians do not reproduce (Kanaaneh 2002), our study suggests a more cautiously optimistic finding: Fertility treatment for the Palestinian population may, in fact, serve as a conciliatory element in the otherwise convoluted regional reality. Because of their entitlement to infertility care, Israeli Palestinian men generally had more positive feelings about overcoming their infertility, compared to the embittered, heart-wrenching, and frankly depressing accounts of the war-scarred, infertile Palestinian men in Lebanon. For the latter group, access to infertility services will likely never become a fundamental reproductive right. Indeed, globalization and the concomitant spread of biomedicine have also brought along neoliberal values of reproductive “rights,” “choice,” and “freedom.” Such values invest the individual (and the so-called couple) with the responsibility for their health and illness, with every person expected to care for himself in the name of striving for a better quality of life. Within this perspective, a person with a chronic condition such as male infertility should actively seek treatment, or find other strategies to overcome his childlessness. Male infertility is thus no longer mere destiny; it also becomes a challenge and test of a man’s capacity to fend for himself, his wife, his marriage, and the future of his family. For those men who fail in this regard, they may be blamed for not availing themselves of their choices in the reproductive marketplace (Spar 2006). However, as argued elsewhere (Inhorn and Bharadwaj 2007), the notion of reproductive “choice,” promulgated at the 1994 International Conference on Population and Development in Cairo and sustained to the present, has yet to materialize for many people around the world,. The discourse is oriented toward women, is still focused on provision of birth control, and fails to account for the many ways—social, economic, and political—in which people lack true reproductive agency. For marginalized populations living as minorities, refugees, and exiles, including most infertile Palestinian men, reproductive choice and reproductive rights remain a utopian rhetoric. In summary, male infertility is experienced by Palestinian men as a deeply troubling, chronic condition that affects their subjectivities as men and members of their communities. For reasons that are still poorly understood, Palestinian men are at high risk of male infertility, a condition that is typically diagnosed in relatively young men, but that is eventually experienced by many as a chronic, intractable condition. Male infertility can lead to years of repeated failure in the biomedical realm, given the generally incurable nature of this affliction. Male infertility, as a biological reality that is graded by its severity, also becomes a major biographical disruption and a chronic fact of life for men who “fail” the treatment modalities now available, including ICSI. Men live with the chronicity of male infertility on a daily basis, as they experience the disruption of the assumed coherence between one’s body and reproductive life cycle. The consequences of male infertility are especially grave because the norm of childbearing



is universal and its fulfillment is a major underpinning of a man’s social status. Thus, unlike infertile men in the Western world, who “are relatively free to keep their stigma secret” and “pass” as “voluntarily childless” (Greil 1991: 22), infertile Palestinian men are exposed to social scrutiny as they fail to impregnate their wives—given that proof of fertility is a crucial component of maturity, marriage, and manhood. As summed up in the words of one infertile man: The child, he completes the family, and no marriage is completed without the child. We must have children to be happy. No couple is happy without them. NOTES

1. See Tzili and colleagues (2006). 2. SeePalestinian Central Bureau of Statistics, 2005 pcbs/PressRelease/abstract_e.pdf. 3. See 4. The relatively high rates of tax evasion by Palestinian citizens of Israel are commonly attributed to a strong sense of alienation vis-à-vis the state (Brender 2005).

5 VVVVVVVVVVV “Half a Woman” Embodied Disruptions and Ideas of Gender among Australian Women L E N O R E M A N D E R S ON

Scholarly attention and public health priorities related to women’s health have typically focused on pregnancy, childbirth, and other aspects of women’s reproductive health, and by extension, risks to the lives of women and their children. The chronic conditions that affect women uniquely or primarily—conditions that are not fatal, infectious, or exotic, nor with significant population impact— conventionally hover in the peripheral vision of most researchers; they rarely appear in government health policies or national audits of women’s health. Yet globally, women are affected routinely by common and persistent gynecological conditions that do not require urgent medical attention, are often managed by home remedies, and unlike various cancers, are not life threatening. The conditions that I discuss in this chapter, largely evident by menstrual anomaly, are of this category. They have aroused limited interest among medical and psychological researchers, virtually none among anthropologists. But as I explore, they cause considerable suffering on an everyday basis to women worldwide, including as a consequence of their longer-term physical and social effects. In this chapter, I focus on Australian women who, often after considerable delays and unsuccessful self-management of menstrual health problems, are eventually diagnosed with endometriosis or polycystic ovarian syndrome (PCOS). In association with these two conditions, many of these women also experience infertility or subfertility and early menopause, and may also have a hysterectomy. Women in very poor countries suffer especially from unresolved pain and infertility, because of the internalization of norms related to women’s health, as other authors in this section also discuss, because of the particular uneasiness related to menstrual and associated reproductive tract problems, and because of poor access to health services. However, embodied disruptions unsettle women’s own sense of womanhood and femininity even in highly privileged industrialized settings, where we might expect that gender-based interpretations of illness and their social outcomes have been ironed out. But gender is




an intransigent variable. As I explain, faced with bodily dysfunction, women see themselves as only “half a woman.” My key argument revolves around limits to the negotiability and contingency of gender, in ways that lead women who experience gynecological health problems to represent themselves as “half a woman” or “less of a woman.” I illustrate how women predicate or contest gendered personhood in relation to their understanding of the interdependence of reproductive ability, physiology, bodily structure and function, and lifelong aspirations. Women spend much of their time disguising and managing signs of bodily disruption and controlling pain, while searching for a diagnosis and resolution of the most distressing symptoms. Women draw on ideas of gender and normal gendered bodies to make sense of the habituality of such conditions, to enable them to live with recurrent bodily disruption, often with untreatable effects on their reproductive health and life aspirations.

Background Women’s health is still largely regarded as synonymous with matters of pregnancy, birth, and the life cycle. Although three decades of feminist anthropology have led to an extensive literature on reproduction, there has been limited attention to how biology (that is, sex) and society (gender) influence the experience of any and all diseases. Even within medical anthropology, the research on pregnancy and childbirth predominates; a smaller proportion of work attends to menopause, infertility, and contraception; less on breast cancer and other bodily states. Where scholars have sought to stretch questions of gender, we have turned to how gender fundamentally shapes the risk factors of disease, the presentation of symptoms, diagnosis, treatment, and care. The gendered patterns to the risk, distribution, and outcomes of disease vary according to locality, and so are produced by a combination of the economic, social, and cultural environment. Yet everywhere, sex and gender matter, and the social roles that flow from biology influence how women manage their bodies and their health outcomes. The politicking in relation to women’s health largely took place as part of the women’s movement in the 1970s. Throughout the industrialized world and beyond, as reflected early in the work of the Boston Women’s Health Collective and Our Bodies, Our Selves, women individually and collectively argued the embodied realities of postnatal depression, premenstrual tension, chronic pelvic pain, reproductive tract infections, and the persistent echoes, physically and mentally, of sexual violence and abuse. Consequently, often with World Health Organization (WHO) involvement, various initiatives have been established to create and sustain public health awareness of women’s health. The women’s health movement prompted a critique, supported by academics, of the medicalization of the biological processes that provided the rhythms



to and punctuated women’s lives; this is reflected in some of the anthropological work on reproduction and childbirth (Davis-Floyd 1992, 1997; Jordan 1978/1993) and menopause (Lock 1993). But in the absence of medical services, women’s lives are routinely at risk, as Liese illustrates in this volume. And many women are attracted to the choices that medicine offers: They desire ultrasound and screening in pregnancy, a fully hospital birth with the option of pain control or a planned caesarean delivery, hormone replacement therapy, and the best assistance possible to address infertility (Inhorn and van Balen 2002; Rapp 2000). On an increasing level globally, women can access information about these various medical monitoring technologies and interventions via the Internet as well as from popular books and journals. For men and women, the prevention, treatment, and management of diseases and illnesses are affected directly, indirectly, biologically, and socially. While a pathogen—a parasite or a virus, for example—may interact with biology (including hormones), leading to differences in the course of disease, this is equally true for noncommunicable disease such as cardiovascular disease, as demonstrated by women’s reduced risk premenopause (Matthews et al. 1989; Vaccarino et al. 2000). Gender, meanwhile, interacts with other social structural and socioeconomic factors, engagement in work, family, and community, associated stress levels and stress reduction, symptomatology and its reporting, access to and quality of care, and ability and willingness to reduce the risk of disease (Brezinka and Kittel 1996; Matthews et al. 1998; Philpott et al. 2001). These various factors influence the risks and outcomes of infectious and noncommunicable diseases in both highly industrialized societies and poorer societies. Social factors straddle and confound any disease or other health condition. But in this chapter, sex and gender are inherent; the conditions affect only women. Dysfunctions, infections, and other perceived anomalous conditions everywhere result in delays in presentation for intimate examination and medical attention. For example, perhaps everywhere, women are embarrassed to present to doctors with unusual bleeding, a profuse, discolored, or odorous vaginal discharge, itchiness or signs of lesions or incontinence. Negative personal experiences of prior physical examination, cultural attitudes toward sexual and reproductive health, medical examination, and health service factors (including the gender of the clinician) also discourage women from presenting to clinics. Women may lack the financial resources, time, or freedom from other responsibilities; lack the autonomy to do so without disclosing to other householders the nature and location of their problem; and may fear that any symptom may be interpreted as evidence of sexual license (Voeten et al. 2004). Women’s ability to seek treatment for sexual and reproductive tract infections is further inhibited and complicated for women in marginalized communities, by virtue of their histories of dispossession, exclusion, and violence, and by extensive structural, social, and economic barriers to services (Farmer 2003).



The chronic social conditions in which women live compound these barriers, and as a corollary, high rates of reproductive tract infections are the bodily symptoms of systemic chronic suffering. The health status of indigenous Australian women illustrates this point: These women have a life expectancy that, at sixty-five, is seventeen years below that for other Australian women (Australian Institute of Health and Welfare 2006: 221) and have disproportionately high rates of cervical cancer, sexually transmitted and reproductive health problems. Their reluctance to present for screening or to receive treatment and care for both cervical and breast cancer highlights the relationship between the chronicity of inequality and structural violence and early mortality (Kirk et al. 2000, 1998). Other women in Australia too are vulnerable because of low education, low income, immigrant status, or area of residence; worldwide, the same patterns apply. Social and economic inequalities influence the incidence, prevalence, diagnosis, management, and outcome of all communicable and noncommunicable diseases. However, many diseases and conditions, conventionally considered to be chronic—including endometriosis and PCOS—are not artifacts of social difference, and there is little evidence of their variation across class or other variables. Yet while different sources of inequality affect access to medical care, advice, and support for any health crisis or condition, endometriosis and PCOS bring gender to the fore, within and beyond the clinic. In a global context, Australian women experience endometriosis, PCOS, and other related conditions in relatively privileged circumstances. Although now limited in its distribution, some doctors still provide care at no cost to the patient through bulk billing to the federal government. Basic health care is accessible and affordable for most women. Gender of the health provider is a preference but not a cultural mandate. In other settings, by contrast, the pressures placed on women as a result of their biology—to reproduce, for instance—are far more dramatic, but because of their intimate manifestations, the conditions are largely under the social radar and beyond the clinical gaze.

The Australian Example Australians enjoy the advantages of a modern health state. Primary care is provided predominantly by general practitioners, who are an essential gateway for the formal referral of patients for technical diagnostics (pathology, imaging, and so on), treatment, or further diagnosis, advice, and care by a medical specialist. Minimum fees are set and are refunded to patients by the government, through compulsory contributions to national Medicare. Specialist services and hospital care are also partly covered to limit out-of-pocket expenses for all people. Under the Pharmaceutical Benefit Scheme (PBS), a substantial number of commonly prescribed medications are subsidized for all people. People on limited incomes are entitled to a Health Card or some other concession card; depending on the



benefit, this further reduces the cost of medicines under the PBS and may also provide other health, transport. and educational concessions. Private health insurance, for those who can afford to pay the regular subscription, provides consumers with a wider choice of practitioner at the time of referral and for follow-up appointments and procedures, diversity in terms of modality, quicker access to surgery and a private hospital ward, and the subvention of various services and equipment. Depending on the scheme, private insurance can also cover the cost of ambulance service, dental and optometric care, acupuncture and chiropractic surgery, psychology and counseling, and various alternative and complementary therapies. For the most part, on the basis of international comparisons (e.g., the United States), the health system is highly effective, efficient, and fair. Access to health care, therefore, is not contingent on private insurance, although the speed of diagnosis and treatment, and choice of clinician, is influenced by this. This is not to suggest that all people enjoy the same level of care. Rural and remote areas have proportionately fewer doctors and, without travel, their residents have limited access to specialist services and tertiary care. Indigenous Australians still have extremely poor health outcomes, as reflected by their shocking and intransigently low life expectancy (Pincock 2008). Refugees and other recent immigrants often face difficulties finding compatriot providers, accessing interpreter services, gaining information, and navigating the system. Pockets of racism shape various health as well as other interactions. But in a system that works well enough, in general, other pits and fissures are revealed: the continuing difficulties experienced by those who are disadvantaged socially, economically, and geographically, who are frail and elderly, or who have multiple chronic conditions and lack active networks that might provide buffers and prevent further declines in health and well-being. Because women outlive men, and more women are poor, women are overrepresented in these groups. But in addition, as I discuss later, women find the health system particularly difficult when they seek to resolve commonplace, refractory health problems. Women’s difficulties arise because of how these problems are interpreted. In the case of endometriosis, the presenting symptoms are “normal” for all women, and so ignored; in the case of PCOS, the symptoms challenge normative ideas of femininity. Women must come to terms with the symptoms or seek to control them, must adapt to and make sense of the treatments, and they must make sense of the lifelong social implications of the diseases that cause their symptoms. Women make sense of the chronicity of their circumstances through resort to gendered idioms. To illustrate this, I draw on extensive interviews with ninety-four Australian women, all of whom had been diverted from their own expectations of life choices, with profound disruption to their self-identity, as a result of chronic reproductive health problems. The interviews were conducted with women living in rural and urban areas in the state of Victoria, southeast Australia, one



of the smallest and the most densely settled states in the country. Melbourne, the state capital, has a population of 3.5 million and is Australia’s second largest city. The city has extensive medical facilities, hospitals, medical research centers, clinical specialists, and specialized services that promise sophisticated, efficient, and accurate diagnosis and treatment—the promise of any and all modern biomedicine. The pathway to definitive diagnosis is ensured by federal government funding and defined processes, as explained earlier. Women were informed about the study through advertisements published in community newspapers, notices placed on information boards of community and women’s health centers, and through the electronic networks of these agencies and other networks operating to meet the needs of women in rural and remote areas. The study was described using the title of the research project, “Disrupting the Idea of Woman,” not to recruit only those women who felt their lives had been “disrupted” in some way, but to provoke potential participants to think through the implications of ill-health and/or bodily dysfunction so that, when we met for interviews, they would be able to theorize about this. In other words, we invited women into our analytic as well as descriptive tasks. In the recruitment material to explain the use of the term disrupting, women were offered certain examples of conditions of interest to us (e.g., endometriosis or premature ovarian failure), but they brought up far more physical and social instances in which life expectations and bodily conditions were disconnected, disrupting their own expectations and hopes for their own lives and their associations between bodily states and being a woman. Unresolved infertility, chronic pelvic pain, breast-feeding failure, multiple miscarriages, and various common serious disorders of pregnancy all disrupted these expectations; so did other kinds of ill-health, their level of education and residence, and the quality of their marriages and strength of social networks. Potential participants, who contacted me or another member of the research team in response to the advertisements and notices, received the participant information statement; if they provided informed consent to participate in the study, we proceeded to arrange to meet them and interview them. The aim in interviews was to explore comprehensively questions associated with search for diagnosis, lay understandings of the diagnosed conditions, adaptation to the chronic conditions and their impact on women’s everyday lives, bodily perceptions, identity, and relationships (Manderson et al. 2008; Markovic et al. 2008a, 2008b). In general, the conditions that women described were incurable, difficult to treat, and unremitting, at least until menopause. While some conditions for some women were resolved over time with medication and/or with surgery, this often led to new disruptions and biographic discontinuities, further rupturing women’s lives. The effects of the conditions, in other words, were long lasting and chronic even if, in their physicality, they were not. The women who participated in this study were aged twenty to seventyeight years (mean 43.6 years). A significant number were professional women



with tertiary education (46 percent); a further 35 percent were retired or undertook domestic duties without outside employment. Intentionally, because of my interest in locational factors, four of five women resided in rural areas or regional cities (81 percent), and consistent with this, the vast majority of women were Australian-born (85 percent). Most were currently married (61 percent), had ever been pregnant (92 percent), and had had zero to six live births (70 percent). Twenty percent of women had also experienced miscarriages or perinatal deaths. Many women had more than one condition, too, as I describe in the following. The conditions that prompted women to respond to the recruitment notice and to be interviewed, that disrupted their notions of “normal,” were conditions that profoundly impacted their ability to reproduce. In summary, the women who participated in the study had experienced one or more of the following: endometriosis (thirty-one), PCOS (thirteen), early menopause (six), hysterectomy (thirty-five), oophorectomy (thirteen), common serious pregnancy disorders (twenty-two), breast-feeding failure (nine), unresolved infertility (seventeen), and repeated pregnancy losses (twenty-one). Older women explained that they were attracted to participate in the study because it afforded them the opportunity to speak to an outsider, often for the first time ever, of disrupting and disruptive bodily states. Many women also spoke explicitly of their motivation to participate in the study to make public their own experiences and understandings (Warren et al. 2006). The basic presumption that women brought into interviews, and that they shared with their clinicians and families, was that a normal woman—or a “real” woman—has children, and the biological quirks and pathologies that led women to reflect on being only “half a woman,” as I describe, derived from this fact. The interviews with these women, located in the discourse of contemporary Australia, provide extensive narratives of the gendered basis of constructions of normality. In the following, I illustrate how both healthy and normal bodies are defined against exceptions and anomalies of body parts, functions, and processes, and draw attention to the anomalies and contradictions as women first identify their bodies and bodily functions to be abnormal. I examine how women conceived of other women, and how such conceptions fed into their sense of difference and incompleteness. I explore how surgery, while resolving physical chronic illness and validating women’s experiences and reports of this, added to their sense of difference, by stripping from them the possible resolution of a chronic condition that would allow them to return to a normative life trajectory. I then examine the accounts of some of the women who had embraced a resistant identity as a woman. For these women, freedom from the seeming timelessness of a chronic condition transcended any ambivalence in gendered performance. Endometriosis, PCOS, and other conditions affect menstrual regularity, interfere with fertility, and disrupt everyday activities, forcing detours in women’s



imagined biographies. The conditions are physically wearing, sometimes incapacitating, and typically extremely distressing psychologically; the narratives that women give of living with them inevitably emphasize their chronicity and apparent incessancy, and the concomitant physical and emotional suffering. Menstrual and chronic pelvic pain in particular eroded time and space, as women sought diagnosis, attempted to manage their discomfort through medication and other strategies (hot baths, massage, water bottles, vitamins, etc.), and tried to make sense of the implications of the conditions in terms of their future, including, depending on age, their ability to conceive children and so establish a family. Doctors argued that a hysterectomy would end the suffering for women with endometriosis, although endometrial implants within and beyond the pelvic cavity sometimes led to continuing disease, and scar tissue around implants caused further problems. The resolution of other conditions was also often problematic, but, despite the finality for future reproduction, the possibility of a pause to the suffering was sufficient for many women to take this path. Where surgery was successful, they were ebullient.

The Dilemmas of Defining Normal The categorization of a condition as chronic, from a biomedical standpoint, has conventionally derived from its natural history, with respect to the pathological processes that result in changes in bodily mechanisms, functions, structures, and forms, and with respect to the cause and potential treatment of the condition. Without treatment or some other intervention to divert or stall its progress, a chronic condition is understood to be ongoing, by its nature, and (potentially) degenerative: It is not self-limiting. But this is not always true of diseases, and it bears little relationship to how people experience and regard various conditions. There is also wide variation from individual to individual in relation to the severity of a given condition. A particular disease can be relentless and ever present, as experienced by people with pain from advanced arthritis or other musculoskeletal disorders, or with tremors or numbness that present with various neurological conditions. On the other hand, a chronic condition can be episodic and recurrent, as occurs with asthma or epilepsy; can be marked by intermittent or extended absences, remission, and abatement of symptoms (e.g., for various autoimmune disorders); or may last for an extended period but need not inevitably be endless (as occurs with various postviral fatigue syndromes and chronic fatigue). Minimally, however, a chronic condition is long lasting. Its extended duration, as much as the intensity or unpleasantness of specific symptoms, contributes to the suffering that accompanies it. While Charmaz (1991) writes of good days and bad days, the suffering that people experience with a chronic condition is because any day has the potential to be a bad day. People negotiate their social worlds with uncertainty.



Georges Canguilhem (1943/1991) and Drew Leder (1990) emphasize that the normal or healthy body—as opposed to what they describe as the pathological body—is a transcendental state, abstract and indefinable. In the same way that disability theorists have proposed that a measure of disablement or impairment is inevitable, and so all people may be “temporarily able-bodied,” so too are all people only “temporarily healthy” if this is defined in terms of the absence of disease or decline. Even the most empirical approach allows that health, and the state of being healthy, is established by exclusion and elimination. For the most part, biomedicine enjoys confidence in its ability to determine physical pathology relatively easily by the presence of obvious anomalies on the body’s surface, or at an organic or a cellular level. Mental or cognitive pathology is determined through the similar distillation of “normal” behavior and ideas in contrast with frank deviance. Doctors diagnose by documenting, gathering together signs and symptoms that appear unusual. Any sense might draw attention to such anomaly and disturbance: Clinicians look, smell, palpate, listen, gather samples, and read laboratory results in order to name—diagnose—the condition. Identifying pathology when the presentation is acute and symptoms are intense is relatively straightforward, even if a definitive diagnosis is not possible. Atlases and systems of classifications of diseases, such as International Classification of Disease (ICD) and the International Classification of Functioning, Disability and Health (ICF) (WHO 2001, 2007c) reflect the continuing project to map the diseased body, its systems, and the mind, in concordance with established ideas and current knowledge. The flaw in this process, as Canguilhem (1943/1991) argued, is the indefinability of the normal, although, as feminist scholars have demonstrated, the normal body in research certainly was male, at least until recently. This presents an obvious problem in relation to menstruation, as to other female body functions. Individuals’ ways of identifying pathologies of their own or other bodies are similarly based on the recognition of discernible unusual signs and symptoms in appearance, feel, or function, either against their own prior experience or in contrast to others’ experience. Although the normal is elusive, it is the clear diversion from what is usual that motivates a person to present for medical advice, diagnosis, reassurance, treatment, or solace. While it is relatively easy to identify and react to acute onset bodily conditions, conditions conventionally regarded as chronic are often much harder to recognize for the layperson and, often, for the physician. The nature of the presenting symptoms can be confusing—for heart attack for women especially, for instance—or elusive, as in the early stages of ovarian cancer, for example, or as Smith-Morris discusses in relation to gestational diabetes in this volume. Many people with poor health face difficulty establishing support from family and friends, both because of the long-lasting nature of the condition and its often muted, confusing, poorly understood, and sometimes prosaic symptoms. Lupus is one such condition (see Miles, this volume), and other immune-related



conditions and syndromes are even harder to fathom. Other conditions are confusing to doctors as well as family members, because they cannot be measured in any definite and definitive manner. While a blood sample, a biopsy, or an ultrasound may reveal physical pathology, pain, for instance, is impossible to “see” objectively and so to prove (Scarry 1985). In such cases, not only of pain but also of other subjective experiences of the body, the usual or normal is as difficult as the pathological to identify. The lack of a clear benchmark of normal raises questions of the veracity of reports by patients to doctors, for example, of dysfunction or anomaly. Tiredness, lethargy, torpor, indifference, listlessness, loss of concentration, aches, pains, tightness, pressure, and other vague descriptors rarely match diagnostic categories, particularly if there are no obvious biomarkers of disorder (through the most obvious visible signs, such as temperature, or as a result of pathology investigations). The more difficult it is to link a subjective account of discomfort or suffering with a disease entity, the more likely the report is questioned. This is precisely the dilemma for women with period pain. The “normal” of menstruation, therefore, is an arithmetic mean, so allowing for deviation. Menarche may occur at any time from (say) nine to sixteen years, menopause from forty-five to fifty-five, or more. A menstrual cycle can vary from twenty-one to thirty-five days, its duration three to seven days, with a measure of discomfort expected but variable for each woman. Women share with other women general reports of and complaints about fluid retention, bloating, aches, and pains, reinforcing to themselves and others that some discomfort is normal. Women may experience leg and thigh, lower abdominal and lower back pain, diarrhea and/or constipation, irregular or heavy menstrual bleeding, intermittent bleeding, headaches and nausea; these may all be regarded by doctors, in books, by friends, and by women themselves as “normal.” Over-the-counter medication to deal with period pain, and the range of sanitary products, reinforce the idea that menstruation has its discontents. The persistence and predictability of at least some discomfort for most women, and so women as a population group, are evidence of normality. Given variance, women who present to doctors because of menstrual discomfort are typically treated as given to exaggeration or with a low pain threshold, modern versions of the nineteenth-century’s hysterics, their complaints instantiations of pathological personalities. Women who were interviewed in this study reported that they were often treated both by their doctors and their families as prone to melodrama and hypochondria. Because their reports of anomaly were dismissed, so too were their accounts of the chronic nature of dysfunction. Women’s first task was often to prove the contrary. Rosa (endometriosis, ovarian cysts) recounted how her reports to doctors of “spasmodic stabbing pain,” “lots and lots of lower back pain,” and bloating were framed as “a cross you bear, you’re a women,” leading her to reflect that, for some women, “it’s a legacy, it’s meant to be painful. It’s your right, you must feel pain to feel



feminine.” Lucy, who had hypermenorrhea eventually resolved by a hysterectomy, similarly described the difficulty of proving abnormality to her doctor, given that her representation of symptoms—heavy bleeding—could also be regarded as within a range of normal and so unexceptional: I just don’t like having my period. I don’t know if other women like it or not but I just don’t. I guess if they had heavy (bleeding), they wouldn’t really . . . (The doctor) said all women are different and some women are prone to that sort of thing. He asked me about my family history. I told him I don’t know a lot but my mother has had a lot of problems and as far as I’m aware my sister has been okay with her cycle. So he just explained what the pill would do. . . .

In seeking resolution for pain and other discomfort, women typically moved between general practitioners and gynecologists in search of confirmation that their experiences were abnormal and in search of definitive diagnosis (Manderson et al. 2008). Typically, women say they were told, “it’s a woman’s thing—put up with it,” even if a medical intervention did occur. Linda, who participated in the study because of endometriosis and very early menopause (at age twentyeight), had her first dilation and curettage when she was thirteen, at an age usually regarded as too young for menstrual problems to be considered abnormal: I had my first curette to get rid of the clots, ’cause I laid clots the size of that soup spoon. And I mean laying. You can feel them coming. You’d go to the toilet and out it’d slip. Well, it was almost like liver. Do you know what I’m talking about? Like the size of that, and I was thirteen. I absolutely drive people insane. They think that I’m an absolute mad woman. ’Cause I want everybody to know everything they possible could, um, you know, about endometriosis and, you know, what I had the doctors do.

Many doctors regard women’s accounts of dysmenorrhea and other anomalies (very infrequent, unpredictable, or extremely frequent and heavy periods) as exaggerated claims of normal states that do not warrant attention and investigation. If women have no evidence of infection, and so represent no risk to intimate others, clinicians may feel that there is limited reason to actively pursue diagnosis of pathology. By women’s reports, general practitioners especially, as opposed to gynecologists once they were referred, often accepted women’s accounts of the chronicity of suffering only after women’s graphic descriptions (as seen earlier)—unremitting cycles of excessive and disabling pain, bloating and cramping, and unusual density, texture, and frequency of flow, or scant bleeding and night sweats. Women often embarked on extended consultations, shopping around from doctor to doctor and experimenting in their own management. Women may be diagnosed finally with endometriosis, a chronic condition that is, in the words of one participant, “far more than a bad period.” If pharmacotherapy failed, the only possible intervention to break



the cycle of crippling pain was surgery. In order to put a break on the chronic condition itself, and its interruptions to everyday life, women traded menstruation and the reproductive potential it promised. Similarly, women who began to experience early symptoms of menopause, such as hot flushes and menstrual irregularity in their twenties, reported times when they felt treated dismissively by doctors. And like women who had hysterectomies, women with early menopause and with other gynecological dysfunctions shared a discourse of absence and incompleteness.

“Half My Womanhood out the Window” Personal identity is entwined with bodily function, and the literature on chronic illness and chronicity draws attention to the disruptions that occur as poor health punctures social capacity and sense of self (Becker 1998; Estroff 1993; Charmaz 1991). Pain and sickness interfere with ordinary tasks: for younger women, going to school, for example; for older women, maintaining home and family, work, higher education, social involvement in the community, and engagement with other family members. Women work around the predictable episodic disruptions of menstrual dysfunctions, most although not all anticipating good days as well as bad (Charmaz 1991). Most of the women who were diagnosed with endometriosis eventually opted for an oophorectomy (removal of ovaries) or a hysterectomy in order to inhibit estrogen production and so control pain and other symptoms. These women, as they saw it, replaced one chronic condition with another, or with a series of chronic conditions and states—endometriosis replaced with hysterectomy and surgical menopause, with its characteristic hot flashes, night sweats, other microvascular symptoms, and vaginal itching and/or dryness. In making this trade, women gambled on fewer role disruptions from a new set of chronic symptoms than had occurred with the former. The sense of loss was marked for some women. Adrienne, for instance, had endometriosis and had an ovary removed following an ectopic pregnancy: “I thought, oh my God, there’s half my womanhood just gone out the window. My whole reason for being a woman is so I could be a mother and that’s how I have always been brought up.” Pam’s attitude to hysterectomy was similar: “[It felt like] my womanhood had been taken out from under me. My womanhood just went. Just the whole fact of not being able to have sex anymore or want to or have the desire or . . . Feeling like I was totally, what is it, decimated? It’s like I’m ashamed, I don’t want people to know that’s where I am at.” Older women, in particular, saw femininity as embodied, and reflected on the disruption of their sense of self after surgery. Edith and Meg, both women in their seventies at time of interview, had had multiple miscarriages and hysterectomies. They spoke particularly of their sense of loss with hysterectomy, in ways that suggest that they, at least, continued to share the experience common to other women with chronic conditions; now, not their pain, but their loss, was ever present:



The miscarriages . . . that feeling of being inadequate, the worry, the worry of what was the cause, I didn’t understand the cause. I felt that there was something very wrong with me, yes basically an inadequacy, and I wanted my children, I wanted children. Then when I had the operation (hysterectomy), I felt guilty, I felt only half a woman. I was no longer in pain, no up-to-ten-days (periods) and I’m not exaggerating, there was none of that, and it was a relief, it was a great relief. But there was still this guilt . . . I couldn’t have any (more) children, I couldn’t breed. (Edith) It’s an invisible loss because nobody can see that, you know, that it’s all gone. And I also felt that I’d lost a link with my children. Because I no longer had a uterus. [pause] And there’s a link, it’s sort of gone. [pause] I still felt female. [But] you get robbed in the femininity side of things. (Meg)

Meg’s association of her uterus and her children is not characteristic of how Australian women would explain kinship; women are far more likely to emphasize breast-feeding in establishing their ties with their children, and to refer to this in reaction to mastectomy (Manderson and Stirling 2007). However, younger women shared with Edith and Meg a sense of continuing loss associated with the decision to have a hysterectomy to address the chronic disruptions of endometriosis and other menstrual dysfunctions. This was so despite social changes from the 1970s that have led to fewer numbers of women marrying, delayed age at marriage, increased workforce participation, fewer pregnancies and births, and greater numbers of women electing to not have children—all factors that might be theorized to lead to an expectation of the pragmatic accommodation of hysterectomy. For some women, the difficulty in deciding to have a hysterectomy, even after many years of extreme pain, reflected their worries about femininity. As they understood it, the benefit of ending a debilitating physical condition was weighed up in their mind against what they perceived to be costs in relation to their sexuality, sexual function, gendered identity, reproductive capacity, and even, for a few, their kinship with existing uterine offspring. Ginny was able to look back on the dilemma as follows: It was the worse decision I’ve ever had to make in my life and I worried about it. I worried about all these different outcomes. But having now lived through it and got to those outcomes, I should have just gone, “Yep,” and jumped at the opportunity, because I’ve been so well and I’m such a different person since then. The things that I worried about were the usual: Will I still be the same woman? Will I still be who I am? Will I still be, you know, horny, and all those things?

Lyn made a similar point about the existential crisis that a hysterectomy precipitated:



I had this real sense of loss and I’m not sure how to explain the loss. But it was as if something that was a part of me was gone . . . I think it’s that, for me, it’s that inner feeling, that real feeling about being a woman and a mother and a wife, and caring, and I think for me it was probably a lot of the unknown, the worry, you know what I mean? If I lost it, would I still be the same or would I be completely different?

Most women who had had hysterectomies and/or oophorectomies persisted in aligning femininity with bodily completeness. For some women, the tension around the decision making to have a hysterectomy and their enduring sense of loss related specifically to their sense of being “maternal,” of links of biology and feeling, and of losing this sense. Lucy and Lyn emphasized this despite also insisting on the relief that surgery brought them. Lucy reflected that, having had a hysterectomy, she “basically got a life,” yet she struggled with the permanency of surgery and the fact that “I could never have children again and that was very, very difficult . . . because I’m a very maternal sort of person.” Lyn used the same expressions to explain her difficulties in deciding to have surgery and in coming to terms with it: I suppose, being very maternal and being brought up with the belief, you know, I suppose women are here to reproduce and, you know, nurture and care for their babies and do all of that sort of thing and I think for me it was, I’m losing the ability to have children. . . . That took a long time to get over, to be honest. I think emotionally, I went through a lot trying to come to terms with that. Emotionally I think it was more, it was a real struggle I think within myself. On one hand I was really pleased that I had had the hysterectomy but on the other hand I had this real loss and I’m not sure how to really even explain the loss. But it was as if something that was a part of me was gone. It was more around that sense of being a whole woman.

While both Ginny and Lyn articulated their concern of the relationship of body to self (and so to others in typical female roles such as mother and wife), and specifically, of having a uterus and being feminine, the end of the chronicity of pain overrode all other worries and sensations. This was true for other women such as Denise, who felt that in the end, her body made the decision for her, that the cost to her of losing “those organs” was far less than the unrelenting predictability of pain: “You do feel not feminine in a way, sort of stripped of that, that woman concept, I mean you’re still a woman but bits have gone, bits are missing.”

The Chronicity of PCOS Most women expect to partner and have children at some time in their lives. Most do. But around one in ten women worldwide, including in Australia,



cannot. A proportion of these women have PCOS. PCOS is characterized by high levels of androgens, irregular ovulation and irregular menstruation, pelvic pain, multiple ovarian cysts, and visible symptoms that include acne, excessive facial and body hair, male-pattern baldness or thinning hair, sleep apnea, and distinctive patterns of weight gain especially around the jaw and waist. Young women may present early because of erratic menstrual periods and pelvic pain; older women may seek medical advice when they have difficulty conceiving, or because of concern regarding the superficial signs of PCOS. The need for lifelong management of PCOS in order to conceive, if desired, to reduce the high risks of diabetes, cardiovascular disease, hypertension, and high LDL cholesterol, and to deal with obesity and hirsuteness causes considerable distress. As with other serious chronic conditions, with diagnosis women trade uncertainty for the knowledge that their lives will be dominated by medication, monitoring, and body management. Diagnosis is often delayed for women with endometriosis, in part because discomfort with menstruation is regarded as normal. But for women with PCOS presenting with erratic menstrual periods and bodily signs of the condition, diagnosis is prompt and disheartening: “I was so distressed when I came back from that doctor’s appointment. Then I received a copy of the letter she sent back to my GP and you know it was all about ‘this obese hirsute woman’ . . . I was just shattered” (Megan, PCOS). While older women received substantial information on the implications of PCOS for their general health, women diagnosed at an early age were told only that their periods were irregular, with the irregularity normalized. Leanne recounted that her doctor explained, “It’s just one of those things. Thousands of women have it and it’s nothing to be alarmed about. You will have the same normal life.” Now married, Leanne relates how PCOS, its continuing medical management, and her difficulties in conceiving all constituted for her evidence of her inadequacy as a woman: Even now I say to Kevin [husband], I’m a lousy wife and I’m a lousy woman because I can’t even get pregnant and have a family. When I get down really low and teary and all emotional, I say to him that he deserves someone better. And he probably does deserve someone that can have a family without the drugs and the hassles . . . for something that’s so, easy, it’s bloody hard and I don’t get why.

Other women with PCOS similarly explained the condition in terms of gendered expectations and the importance of reproduction to gendered identity: I felt very [pause], um, that I wasn’t a woman. That I couldn’t have a child . . . we come from a background of big families, so if you didn’t have a child then you’re nothing. . . . I felt pretty bad about that. You know, you’re sort of not a woman, you can’t have a child. Nobody. Nothing. (Melanie)



It’s all about having this body that isn’t quite normal, but questioning what that is anyway, and trying to find myself in that spectrum and remembering or relearning over again that every women is unique and it doesn’t make her more or less of one. It’s easy for me to say that now but there have been some very hard times. (Kylie)

Kylie spoke forcefully of how cultural presumptions of pregnancy and motherhood shaped her reactions to being diagnosed with PCOS. Some women had never considered having children, but women like Kylie dreamt of pregnancy and consciously debated whether or not to adopt a child, while resisting the silence around reproductive choice: “It’s the ideology of motherhood and possibly partly biology . . . The problem too is that we are not allowed to talk about the fact that we might feel a bit ambivalent about having a kid. It’s very distressing and I think it effects everybody whether it’s women who have a choice or not and it’s such a wanking dominate thing.” While most women were troubled by the symbolism of loss, and had struggled to come to terms with their health status, others saw femininity as a negotiable state, independent of the body. Several rejected entirely the idea that femininity depended on fertility and reproduction. The women who were most articulate about the independence of gender identity and reproduction tended to be younger, but many women spoke of feeling liberated, “a lucky woman in one sense” (Elaine), able to make the most of life without intrusions and suffering. And others: I had no problems with the feminine side, not feeling like I was a full woman or anything, actually I felt better after I had it, not having periods and having this constant good energy, I felt fine. (Jan, endometriosis, infertility) I don’t define myself that way, so it’s possibly easier for me because I don’t see the physical as being the pinnacle of that definition. The physical helps me in a different sort of way to get to where I want to go. I don’t define myself and my body shape as a woman, it’s in my head. You can take off all the bits that make me female. I’m not androgynous but it’s like, in here is female and I want that relationship in here, the inside of me is female. (Rosa, endometriosis)

Rosa’s use of a discourse of gender was recurrent. Carol had dysmenorrhea, PCOS, and a hysterectomy, and similarly she reflected, following surgery: I feel better within myself; therefore, I feel much better about my body. I don’t feel I have lost any womanhood or anything like that. I feel better, more than anything, more feminine, probably because [before] I had so many male hormones running through my body. Well, I’m quite feminine and girly. I was a bit concerned because I was getting a lot of hair on my chin and stuff. It was just a relief to know why it was and to go from there.



Concluding Remarks: “You’ve got to do something about it” The gynecological conditions on which I have focused—and related common conditions with which women live worldwide—are easily minimized in light of the great disease tragedies that are matters of life and death. Vaginal thrush, cracked or sore nipples, engorgement, bloating, vaginal or labial soreness, urinary cystitis, hemorrhoids, “floods” and breakthrough bleeding, backaches, and leg cramps are neither the stuff of heroic medicine nor high on any burden of disease table. They are not conditions for which women routinely seek medical advice. But this is not evidence of their unimportance or of the severity of the effects they may have on women’s everyday lives. Rather, sometimes because of the recurrence and chronicity of some of these problems and sometimes because of embarrassment or uncertainty regarding what is normal and what is not, women suffer in silence, relying on their kitchen pharmacopeia or the advice of other women to manage episodic discomfort. In this respect, Australian women’s reflections on the normalities of such bodily experiences are a strategy in making sense. Women are discouraged from complaining or acting or reading pathology into their bodily states, because such bodily deviations are to be expected. So normal are these conditions that they are almost never the subject matter of studies in other poor-country settings. With this chapter, I provide an invitation to explore further how women manage their refractory bodies. With chronic gynecological dysfunction, not surprisingly, gender is the key point around which women seek logic, sometimes arguing that their gender—being female—is compromised by their condition or its treatment; sometimes that the condition and its management by doctors is a consequence of sex and gender; and only sometimes that gender exists independently of bodily function. Doctors, family, friends, and spouses talk with women too about the nature of being a woman, the nature of a woman’s body, and of how women’s bodies might steer off course. Women and their doctors draw on the language of gender to make sense of conditions that shape their lives, but they draw on this language in very different ways metaphorically and literally. Clinicians, for example, explain the symptoms of endometriosis, a condition that is estrogen sensitive, in terms of normality; that is, all women experience such symptoms to a greater or lesser extent. Resolving the problems associated with endometriosis involves hysterectomy, the excision of an iconic organ (some women would claim), and so women speak literally of being “less of a woman” or “half a woman.” This is entirely different from being “not quite a woman” because of the elevated levels of androgen and their masculinizing effects on women’s bodies—a woman with amenorrhea and a beard is “more like a man.” Women argue that the conditions themselves, and their treatments, made them “less of a woman” or “half a woman,” and so nothing or nobody. The contours of their lives are tied indelibly to the constitution of their bodies as to the roles they try to fill because of or despite this.

6 VVVVVVVVVVV Ecuadorian Women’s Narratives of Lupus, Suffering, and Vulnerability A NN M I L E S

An unhappy consequence of growing urbanization and increased life expec-

tancy in the developing world is the appearance of more “first world” health problems, especially “chronic disease” (Yach et al. 2004). In Latin America in particular, chronic illness, once associated with the wealthy and privileged, is increasingly found among a wide cross section of the population (Pan American Health Organization 2007). According to the Pan American Health Organization, chronic illnesses tax public and private resources in very different ways than more acute conditions, and many healthcare systems are ill prepared to meet the needs of the growing ranks of those with chronic illnesses (ibid.). By definition, chronic conditions linger for years, causing financial, emotional, and social strain on the sufferers and their families. Even under the best of circumstances, rarely achieved in Latin America, lifelong health conditions change life courses, alter perceptions of life, and impoverish families. In the United States and Europe where chronic conditions have long been incorporated into national health profiles, complex cultural models for understanding, coping with, and communicating about these illnesses have been developed (Frank 1991a; Sontag 1990). However, sometimes these models can be stifling and censorious. Consider Barbara Ehrenreich’s complaints about the “culture of pink” (Gill 2008) associated with breast cancer, and the pathologizing of any response that falls outside the cultural ideals of positive thinking and acceptance of individual responsibility (Ehrenreich 2001). Or the shame that falls on chronic pain patients in Norway when they can no longer remain stoic and uncomplaining (Werner et al. 2004). However, in Ecuador where chronic illness is a relatively new phenomenon, cultural models are still very much in the making. In this chapter, I focus on one chronic illness, systematic lupus erythematosus (SLE or lupus), and discuss how women in Ecuador come to terms with living with an ambiguous lifelong autoimmune disorder. Lupus is not the most prevalent chronic illness in Ecuador. Heart disease and diabetes




affect far more people, but the clinical, epidemiological, and cultural ambiguity surrounding lupus renders it a condition that indexes a range of important social and cultural problems and highlights important social cleavages (Napier 2003; Kleinman et al. 1992).1 Drawing on work in the United States, Napier (2003) argues that because lupus does not fit the commonly held stereotypes of what constitutes suffering—patients don’t waste away and the symptoms come and go unpredictably—the illness experiences of lupus patients are often dismissed and rejected as examples of “real” suffering. Compounding this, the most common and affordable treatment for lupus inflammation, corticosteroids, leaves patients looking falsely robust. Moreover, lupus disproportionately affects women, confounding already potent cultural models about the nature of women’s bodily complaints (see also Manderson, this volume). In the United States, where chronic illness models are plentiful, lupus defies easy categorizations, leaving patients in a murky sea of meaninglessness (Napier 2003). In Ecuador, where there is general ambiguity about chronic illnesses, lupus is an even greater unknown. Most people are unfamiliar with the illness and doctors are often challenged by the unpredictable symptoms, leaving patients struggling to create meaning. In examining lupus narratives here, I borrow loosely from Saris (1995), who contends that chronic illness narratives can and should be read for far more than their personal and experiential content. Saris argues that illness narratives are linked to cultural “institutions,” which he problematizes and defines not as structures or networks but rather, in the Bourdieuian sense of “fields” or as “physical or conceptual” constructs that “set up discourse or practice” (1995: 42). Individual illness narratives, both in what they say and what they leave silent, necessarily are “imprinted” by these institutions or conceptual schemas (1995: 65). The experience of the individual, in sickness and in health, is mediated through (usually in consonance with, but sometimes in dissonance to) the conceptual fields allowed by the prevailing institutions (see also Young 1991). Saris is concerned with understanding the personal dimensions of the illness experience but also wants to “distribute the responsibility for the production of this experience to presences beyond the experiencing self” (1995: 43). In keeping with this understanding, I analyze illness narratives with the intention of revealing how larger conceptual institutions organize and constrain the ways in which Ecuadorian women conceptualize their lupus experiences. I focus here on one particular concept, that of female sufrimiento, or suffering, an idea that was explored by women in nearly every narrative I collected. Sufrimiento is not itself an institution, but rather acts as an idiom through which larger culturally relevant conceptual schema are referenced, articulated, and negotiated. When Ecuadorian women discuss sufrimiento, they call upon a complex set of cultural meanings and index a host of institutional structures, many of which act to constrain women’s lives. While sufrimiento is not the only “idiom of distress” (Nichter 1981) that women use to interpret their experiences, it is



one that speaks clearly to the immediate physical and emotional pain of an ambiguous condition and the existential and structural experiences of being an Ecuadorian woman.

Explaining Lupus Lupus is an autoimmune disorder whereby the body’s immune system attacks its own healthy cells. The disease is unpredictable, characterized by periods of remission occasionally punctuated by “acute” flares. Flares can be triggered by a host of factors, including too much exposure to UV radiation, a cold or flu, or even everyday stress. For some women, even simple, everyday activities must be carefully meted out lest they provoke a “flare.” While there is some evidence of a genetic tendency for lupus, the causes of lupus remain largely unknown. In the United States, where statistics are more reliable than anywhere in Latin America, lupus affects women at rates at least seven to eight times greater than men. Its course and severity vary, but it often affects multiple organ systems including the kidneys, heart, and joints. There may also be central nervous system complications including headaches, forgetfulness, memory loss, and even psychosis. Many women report feeling fuzzy-headed or foolishly forgetful. It is usually a painful and often debilitating disease, and patients must be closely monitored. If a flare is untreated, the inflammation to blood vessels and organs can create irreversible tissue damage. There is no cure for lupus, only the ability to manage symptoms, and most lupus sufferers find that the disease creates real limitations. Moreover, the most common and affordable medications used to manage lupus carry significant risks and unpleasant and dangerous side effects (Kyttaris and Weinstein 2003; Zandman-Goddard and Shoenfeld 2003). Diagnosis is difficult as there is no single test for the illness. Rather, a person is thought to have lupus if she meets four out of eleven diagnostic criteria (Lupus Foundation). Sometimes it can take years before a diagnosis is made, compounding the financial and emotional burdens (Napier 2003). Because of the difficulty and subjectivity in diagnosing lupus, actual prevalence rates probably far exceed reported rates. In the United States rates for lupus range from 17 to 71 per 100,000 among Euro-American women to 56 to 283 for African American women (Manzi 2001), although even these figures are in dispute. Prevalence data on minorities and the poor (not to mention poor minorities) are even less accurate (Escalante and del Rincón 2001: 107). Not surprisingly, no statistics are available on lupus morbidity and mortality in Ecuador (see Danchencko et al. 2006 for global epidemiology of lupus). Prevalence studies have identified specific variables associated with higher rates, many of which are present in Ecuador: having Native American or Hispanic ethnicity (Chakravarty et al. 2007; Walsh and Gilchrist 2006), living in conditions of poverty or low socioeconomic standing (Ward 2001; Walsh and Gilchrist 2006), and increased exposure to ultraviolet light (Walsh and Gilchrist,



2006). Extrapolating from this work, we can reasonably assume that rates in Ecuador are on the higher, rather than the lower, end of the scale. In Ecuador the disease is still not very well known and not well understood by the general public. Most women were taken by surprise by their diagnosis as they had never heard of the illness before their own case, and they had much to learn about the disease. Many women reported that they experienced difficulties explaining their condition to others. More than one woman had someone confuse her lupus with a “kind of AIDS,” since both involve the immune system. Most women told me that they discussed their condition openly only with very close family and gave others only partial explanations, such as saying that they have a “blood disorder” or a “kind of leukemia.” The lack of information and the misinformation that circulates around lupus in Ecuador is an important element in what happens to lupus sufferers, and it figures into how women think about and construct their illness narratives and their sufrimiento.

Suffering and Sufrimiento The concept of social suffering in anthropology highlights the fact that suffering is as much a “social experience” as a physiological one (Kleinman et al. 1997: ix); it is, in particular, inextricably linked to unequal social relations, both local and global, that differentially afflict the poor and marginalized. Medical anthropologists have focused particularly on understanding the meanings, causes, and processes of suffering, in an effort to link its structural and the experiential dimensions (Kleinman et al. 1997). Similarly, when women suffering from lupus in Ecuador speak of sufrimiento, they are referencing both a deeply felt personal affliction and speaking in a kind of short hand for the structural position of women in Ecuador. In the Andes there is a long, complex, and inconsistent historical discourse on the meanings of suffering, much of it infused with deeply religious, especially Catholic, overtones. While other Latin American countries began limiting the influence of the church, throughout the nineteenth century, Catholicism was a defining force in social and political life in Ecuador. Despite efforts by liberals to “modernize” Ecuador’s relationship to the church, “the Catholic Church was considerably more powerful in the 1880s than it was in the 1780s” (Lane 2003: 94). At one point, from 1869 to 1875, Ecuador was virtually a “theocracy” as Ecuador’s president, the devout Gabriel García Moreno, officially charged the Ecuadorian state with the duty of protecting the church, made Catholicism a requirement for citizenship, and declared Ecuador a nation of adherents to the Catholic devotion to the Sacred Heart of Jesus (Lane 2003; Williams and Healy 2001). Explanations of the Sacred Heart of Jesus describe it as devotion, quite literally, to the wounded “heart” of Jesus, symbolizing life, love, morality, and pain. The visible wound in Jesus’s heart, often displayed in church iconography, reveals Jesus’s “vulnerability, its unprotectedness, its human love” (von Hildebrand 2007: 98).



President García Moreno was flamboyant in his Catholic practice and in 1873 he carried a cross through the streets of Quito to highlight Christ’s bodily suffering (Lane 2003). Solidifying his reputation as a martyr, in 1875 García Moreno was assassinated by liberal opponents brandishing machetes outside of church. In a 1914 biography of his life, García Moreno’s last words, spoken after his bloody body was laid at the feet of the statue of the Virgen de los Dolores (Virgin of Pity/ Pains), were reputedly “God never dies” (Maxwell-Scott 1914). Although generally associated with medieval Catholicism and monasticism, self-punishment as a means of moving closer to the divine was still practiced in nineteenth-century Ecuador. Women, whose sexuality is associated with original sin, were viewed as especially in need of penitential practice (see Stølen 1991). In the 1860s Hassaurek, a German American journalist and traveler, described the following women’s mass, which he claims to have witnessed in a Quito church: Towards sundown the curate preaches a short sermon, and then leaves the church in utter darkness. The organist then plays a Miserere, the women bare their backs and lash them with cowhides, to which sometimes small pieces of iron or other hard substances are attached. When this discipline is over, they depart in silence. The blood sprinkled over the stone floor and on the walls betokens the eager earnestness of their devotion. (1967: 76)

Hassaurek (1967) goes on to report that during Lent, both men and women from the finest families in Quito engaged in similar activities when they confined themselves to church grounds for nine days, observing daily deprivations and nightly episodes of self-flagellation. On leaving the church after the required time, the participants were greeted by friends and family, making their ordeal both a private and a public symbol of devotion and sacrifice. While Hassaurek does not reveal what was in the minds of the penitents he observed, most often self-punishment is linked to the notion that pain brings one closer to God. Suffering is a morally charged sacrifice (Asad 1993). To inflict pain on oneself is to recognize man’s existential dilemma of sinfulness, and to accept willingly the burdens of suffering that lead ultimately to salvation. However, Ecuador’s nineteenth-century practice of Catholicism, as elsewhere, was also eclectic and seemingly contradictory. While medieval selfflagellation flourished, under García Moreno there emerged a call for a more romantic Catholicism, one that saw pain and hardship not as a penitential duty but rather as a source of spiritual inspiration and love, which sought to use Catholicism to defend the common people and create an “Empire of Morality” (Williams 2001: 149; see also Escalante 2006). According to Escalante, who writes generally of the romantic viewpoint: “The people . . . was a collective entity, an abstraction, which was defined precisely because it suffered. It was no longer the masses, the ordinary people, the mob that distinguished itself by its vices: it was not guilty or suspicious; it was not a threat, but a victim” (2006: 116). Even



today, Ecuadorians sometimes refer to whole groups of people, especially indigenous ones, as “suffering” because of their historic marginality. These pueblos sufridos are often described with a kind inevitability, as though their geographic and social isolation were a natural rather than social construct. The appellation seems to refer to existential conditions not situational ones. Ecuador is still a primarily Catholic nation, although the state is no longer officially tied to the church. Various sources report anywhere from 89 to 95 percent of Ecuadorians identify as Catholic (Roberts 2006; The Catholic Hierarchy) and Catholic symbolism is ubiquitous in public and private life.2 Most homes have small altars to the Virgin Mary, many shops have portraits of Jesus on their walls, and saints’ days are celebrated with impassioned reverence. However, the most “present” everyday symbolic vehicle in Ecuadorian Catholicism, one particularly important for women, is the Blessed Virgin Mary. Whereas God, Christ, and the saints enter only occasionally into daily practice for the average Cuencano, the Virgin, revealed in a variety of apparitions, is ubiquitous. Moreover, she is not a distant character whose disposition cannot be swayed, but rather is thought to pay heed to her worshippers’ laments and to grant their wishes, at least on occasion. Mary is often seen as an intermediary between humans and God, and much communication from the divine comes through her. The Virgin’s sympathetic nature is thought to be an outcome of her own human suffering, which can be traced to her role as the “Mother of God.” On Good Friday, the most somber day of the Catholic Holy Week, Cuencanos visit seven churches and say the Rosary prayers for the “Seven Pains of Mary,” the most dramatic of which was watching her son die on the cross. The very human suffering of Mary, as a woman and as a mother, makes her an accessible and sympathetic figure to Ecuadorian Catholics and, arguably, a role model for women. The most controversial academic exegesis directly linking Catholicism to suffering and women’s social roles is a once quite polemical and now much ignored article published by Evelyn Stevens in 1973, titled Marianismo: The Other Face of Machismo in Latin America. In this article, Stevens attempts to provide a historical and contemporary account of the “syndrome” of marianismo, described as the tendency of Latin American women to interpret their lives through a lens of suffering and abnegation. Stevens argues that marianismo, while based on Catholic veneration of the Virgin, should not be confused with a religious cult and is now fully secular and integrated into contemporary notions of Latin American femininity. In short, marianismo is rooted in the idea that the “ideal” woman, like the Blessed Virgin, exhibits moral superiority at all times, has spiritual strength in the face of misfortune, and “has an infinite capacity for humility and sacrifice” (Stevens 1973: 94). Stevens suggests that women’s marianismo is a counterpoint to men’s machismo, providing women, many of whom are dreadfully subjugated by machismo, with a moral superiority. While men may be obviously dominant and dominating, perhaps even abusive, women who endure and submit emerge morally and spiritually superior. This frequently results in



a strengthening of social support as family, and even friends, rally around the long-suffering mother figure. Stevens also writes of the sexual prohibitions put upon women through machismo and marianismo and, among other things, discusses the shame and disgrace that fall upon women who do not carefully guard their virginity. Stevens’s article was soundly critiqued throughout the 1980s, mainly because it suffers from all of the conceits of its time (as all published work does). In particular, Stevens’s very broad and encompassing generalizations about marianismo serve to homogenize Latin American women by considering them all of the same ilk, strip them of all agency since they appear to react rather than act, and legitimize obvious social inequalities by interpreting them as cultural choices (Nash 1990; Borque and Warren 1981; Bachrach Ehlers 1991). But aspects of Stevens’s portrayal of male and female relations resonate both in the literature on gender and health in the Andes and in the discourses of the urban Ecuadorian women with whom I have worked for twenty years, both those who are ill and those who are not (Stølen 1991; Anderson 2000; Mitchell 1994). Women in Ecuador from a broad range of social categories of class and ethnicity speak of female suffering or sufrimiento as a distinct condition, but one that is also very much taken for granted. While it is generally recognized and it is often invoked in conversation, sufrimiento is hardly ever parsed and never discussed outside of the contexts of a particular example. In a general sense, much like the pueblos sufridos, women come to their suffering “naturally” simply because they are women. Moreover, suffering is not a neutral event; much like the suffering induced by self-flagellation centuries earlier, it is a marker of morality. Female suffering, often associated with the dolores (griefs) of the Virgin Mary who saw her only son crucified, is accepted as the fate of the moral woman; life is full of pain and loss and events that she cannot control.3 Pain is considered to be part of a gendered spiritual inheritance. The range of what qualifies as sufrimiento is broad. I have heard poor women describe their lives of grinding poverty and hardship through the idiom of sufrimiento, and I have listened while elite women use it to describe the difficulties of being a sentimental woman in an uncaring world. Sufrimiento is not an illness, or an illness category, but a kind of “being in the world” (Merleau-Ponty 1962) that is distinctly feminine. I do not want to overgeneralize the concept of sufrimiento, however, or to present it as the defining principle of Ecuadorian femininity. Rather, following the tropes of my own times, I argue that gender and religion constitute kinds of “institutions” (pace Saris). They provide the rough outlines through which more individually and discursively relevant interpretations of female suffering are generated, although they are not always consistent. Different women think about sufrimiento differently, and an individual woman may be wholly inconsistent in how she references the meanings of it from one utterance to the next. As Saris describes it, “institutional discourses—things to be said and ways of saying them—are produced as discursive objects and then questioned by running them into one another within the narrative” (1995: 66).



The interviews on which the following analysis is based were conducted over three field seasons in the southern highland city of Cuenca. Cuenca is the third largest city in Ecuador and is home to three medical schools and expansive public and private healthcare systems. I interviewed nineteen lupus patients, several of them multiple times over the course of two years. Most of the interviewees were urban residents of the working and middle classes—professional office workers, students, cleaning ladies, and informal workers. However, the most marginal, the poorest of the poor, simply die without ever getting a diagnosis. Both women who I consider in the following have health insurance through the subscriber system of the Social Security Institute (IESS), paid for by their employers. While there are multiple and well-documented problems with the IESS health system, it does provide free physician visits, some tests and medications, and hospitalization.4 One of these two women, Carmella, is a decently paid administrative worker in a government office; the other, Mercedes, is a poorly remunerated cashier in a small private business. As I illustrate, the concept of sufrimiento is just a starting point for these women to think about how lupus is to be integrated into their more expansive life stories. Both discuss sufrimiento in similar ways, yet the meaning and outcomes of their individualized sufrimiento are quite different. Carmella uses the concept to outline broadly, in an undefined way, the general nature of her life. She has suffered from a series of painful personal problems that have exacerbated her health problems, leading to further suffering. Carmella is desperately trying to find some meaning in her personal and bodily suffering, but it is difficult. She worries about moral transgressions and questions her own behavior as well as what she thinks her illness might signify to others, but in the end comes up with no comforting answers. In the second example, Mercedes, whose personal life is only marginally better than Carmella’s, has an entirely different interpretation of her suffering. A member of a conservative Catholic movement, Mercedes sees her illness as an opportunity, a “gift from God” that has the potential to bring her everlasting salvation.

Carmella Carmella is forty-seven years old, with short rust-colored hair. It’s hard to say what she would look like if she didn’t have lupus, since her physical appearance today is marked by the classic side effects of steroid use. Her face is perpetually swollen and puffy; her large protruding brown eyes sit in liquid pools. Even worse than the swelling, in her mind, is the fine down of blond hairs that cover her chin and cheeks When sitting down Carmella appears to be robust, but when she stands up it is obvious how very small she is. Like many Andeans, she carries the weight she has gained on steroids almost entirely on her upper body. Carmella gives the appearance of always rushing, and while sometimes she is, often she just can’t quite fully catch her breath. Her lupus is fairly severe, impacting on her heart and lungs; she often is out of breath after taking just a few steps.



Carmella is a government office worker with some seniority. Because she lives in a neighboring province, about a forty-five-minute bus ride to Cuenca, she regularly has to take time off from work to see her doctor. Fortunately, her employer has been fairly understanding, as she cannot afford to lose her job. Carmella’s story of lupus is among the most difficult that I heard, not just because of the severity of her condition, but because of how her illness compounded other problems in her family. She describes her life as one of unbearable sufrimiento. Carmella comes from a locally important family. Her father was an elected official in his time, but the family is not wealthy and their position has not protected Carmella from a harsh life, and may have increased the public scrutiny to which she feels subjected. As a young unmarried woman, Carmella became pregnant and was sent to Quito by her parents to live, work, and raise her daughter while she waited out the shame that comes to unmarried women who have babies. Through personal connections, her father secured her a job in Quito in a branch of the government where she still works today. She returned to her hometown and her parent’s home when her daughter was four, continued working, and eventually married and had two more children. Her marriage was never a good one; her husband was temperamental, frequently drunk, and occasionally abusive. Carmella’s lupus began five years ago when she was in the midst of a severe life crisis. Her second daughter, then fourteen, was ill with myelodysplastic syndrome, a very serious blood disorder thought to be a precursor to leukemia. Carmella was told that her daughter’s best chances of survival were to seek treatment in the United States. With little savings and a modest income, Carmella took it upon herself to raise money for the treatment. She appealed to foundations for grants, inquired at banks for loans, and pleaded with friends and family members for gifts and prestamos (loans). At one point, she was so desperate for money she even went to local “drug dealers” and “loan sharks” for help. To her surprise they gave her a gift of $5,000 to, as she quoted them, “help the poor sick child.” Carmella wore herself out emotionally and physically during this time, staying up all night to make cakes, party ornaments, and handicrafts to sell. Then, one morning she awoke with some common first signs of lupus: swollen, stiff, and painful joints. Things grew quickly worse; Carmella was in and out of hospitals in the months running up to their departure to the United States. When they arrived in the United States, Carmella was the one in a wheelchair. When they returned to Ecuador, Carmella’s daughter was much improved but Carmella’s health declined rapidly. She spent much of the next six months in the hospital with a number of very serious conditions including cardiac, kidney, and pulmonary complications. Her personal life deteriorated as well. Soon after she was diagnosed with lupus, her husband started questioning her diagnosis and expressed his suspicions that Carmella’s condition and her daughter’s were somehow related and that the two of them were contagious. He refused to sleep



in the same bed with Carmella, and separated out his eating utensils and plates. According to Carmella, whenever they disagreed he dismissed what she had to say by calling her a “luposa,” as though it was some sort of well-understood stigmata. As Carmella’s condition worsened, her husband grew increasingly unpredictable. One night they argued and he knocked her to the floor. When her daughter came to stop their fighting he hit her as well, breaking her nose. The police were called, Carmella pressed charges against her husband, and he left the house. They are now divorced. While Carmella felt relief when he left, she now has to provide for her two younger children. In 2006, Carmella’s daughter’s condition had stabilized and Carmella was intensely focused on her own health. Her lupus was difficult to control; she was obviously depressed and continued to have difficulties breathing. When I met with her privately the first time, it was clear to me that she was desperate to talk; I barely had time to sit down and hadn’t even asked a question when her story (and tears) poured out of her. Although she was relieved that she no longer had to deal with his fiery temperament, her husband’s rejection was a deep psychological blow to her. Her sense of rejection, however, extended far beyond her husband and Carmella felt “disguised” rejection from neighbors and friends who, she noticed, stopped coming to see her, neglected to invite her to parties, or went so far as to make comments about her unfortunate weight gain or facial hair. She claims people were so bold as to ask her “What happened to you? You used to be so pretty!” Lupus, she says, took all of the joy out of her life. Living with lupus is “like being crippled without anyone knowing” and like “having a life without really living.” Carmella knows everyone in town and she is convinced that she is the topic of vicious gossip. Carmella’s narratives are filled with contradictions and half-formed thoughts.5 In so many ways, lupus is the quintessential “postmodern” illness, flush with ambiguity, conditionality, and subjectivity (see Napier 2003). There are no definitive answers about its causes, the best approach to treatment, or the course it will take in any individual. Because of this, patients often find themselves trying out different ideas as they seek to make sense of their experiences or look for some glimmer of hope. Rationally consistent narratives are rarely present (Young 1981). For example, Carmella’s conversation doubles back periodically on questions of morality and the relationship between moral behavior and illness. In discussing her life prior to lupus, Carmella makes it clear that she led a “clean” life. She did not smoke, drank only a little at an occasional party, and was never sexually promiscuous. When I asked Carmella directly whether she thought that these activities could cause lupus, she said “of course not,” and gave me a fairly accurate biomedical description of the disease process. Nonetheless, it seemed to matter to her to tell me that she was morally blameless. Carmella worries that others are making moral judgments about her, and assumes that they are wondering whether she has done something immoral and therefore “deserves what she gets.”



Carmella uses sufrimiento as a mobile concept to describe her own responses to the hardships of her life. Most often she describes her life as one of “endless” sufrimiento, primarily because of the vulnerabilities that come exclusively to women. As an unwed mother two decades ago, she violated strict moral codes and faced both public and private censure. She was effectively exiled to Quito and billeted with distant relatives, where she “suffered” alone until her family allowed her to return home. The father of her child faced no such consequences for his behavior. Today, although Carmella rejects moral explanations for her illness, she examines them anyway. Then she married a man who proved to be more than a disappointment and Carmella speculates about whether the sufrimiento caused by her bad marriage contributed to lupus. While she imagines sometimes that a lifetime of sufrimiento finally erupted in lupus, she also understands that lupus exacerbated her sufrimiento. Yet, while her physical suffering is obvious, she finds her emotional suffering more difficult. One of her first comments to me was that “the worst part of this illness is how alone you feel. It is the psychological things that hurt the most.” By employing the idiom of sufrimiento, Carmella attempts to bridge the gap between the known and the unknown, linking her dubious lupus experiences to easily understood discourses about female vulnerability and morality. Because the details of her illness are so difficult to grasp and because the unknowns of lupus are never comforting, sufrimiento provides Carmella with an idiom that affirms her own moral blamelessness. Like other women and like the Virgin, she suffers with a wounded and vulnerable heart. By placing lupus within a life story that is characterized by sufrimiento, her lupus becomes integrated into a narrative plot that makes sense to her, and is an attempt to find some common ground so that others can more easily relate to her experiences.

Mercedes Mercedes is in her early forties with short dark hair that frames her lively face. In contrast to Carmella, Mercedes is always quick to smile and she tells her story with a glibness that belies its seriousness. “Looks like I won the prize,” she declares ironically when talking about her lupus or her family troubles. Like Carmella, Mercedes’s life has been difficult, but even more financially precarious. Mercedes lives in a rambling and crumbling tenement in the heart of downtown Cuenca. She has been married for more than twenty years, and for most of that time she has been the sole income earner in the family. Five years after they were married her husband suffered a cerebral hemorrhage and since then, he has been unable to work. As Mercedes describes it, her husband is like a child who does nothing but hang out in the street and talk foolishness with his friends. She has two grown daughters: One recently left her husband and returned to her mother’s home with her young daughter (another of Mercedes’s “prizes”); another only recently married. Her own mother lives nearby and provides Mercedes with significant support.



Mercedes’s lupus began about three years ago at Christmas when Mercedes spent the morning outside in the sun watching the traditional Paso del Nino procession. When she returned to her house, she was terribly hot and noticed livid, red splotches emerging on her face, neck, and chest. She took a shower to cool off and claims that while she was bathing, she smelled a burning odor coming from her own skin. Over the next few days, her hands began to swell and the skin lesions grew more intense; her nose turned black. She was diagnosed with lupus after three months, and by that time, she was terribly ill. She was admitted to hospital, and there she became delirious. Her doctor prepared her family for her death. All that Mercedes remembers from this time is walking through a field of beautiful flowers, and hearing the heartfelt entreaties of her Catholic prayer group as they gathered around her bedside. Mercedes survived, but her lupus has remained difficult to manage. She was forced in 2006 to take six months leave for disability, which greatly reduced her family’s income. Mercedes’s family is poorer than Carmella’s, and she expresses many ideas that are associated with rural or “traditional” Andean thinking rather than more urban, cosmopolitan, or biomedical conceptions. Mercedes and her mother speculate on a broad array of theories about the causes of Mercedes’s lupus: contagion, spirit intrusion, contact with toxic substances. However, all of their theories return to the theme of the vulnerability caused by Mercedes’s difficult and precarious life and the sufrimiento she has endured as a female head of household. Like Carmella’s interpretations that sufrimiento can wear down the body, Mercedes and her mother believe that Mercedes is physically worn down from her double duties. Mercedes’s mother thinks that her lupus may be caused from spirit intrusion because her symptoms began soon after she returned from a visit to the tombs of family members. Cemeteries are liminal places in Andean cosmologies and free-floating spirits often wander around playing havoc with humans (Allen 2002). Mercedes’s everyday exhaustion and the sad nature of her visit weakened her, making her vulnerable to an encounter with mal aire (evil wind). Mal aire is the idea that certain places, especially cemeteries, are associated with evil spirits that can enter a body and weaken it. But it could be something else too. Mercedes and her mother also consider the possibility that Mercedes’s job as a cashier might have given her lupus. At her job Mercedes handles money all day long. The money passes through thousands of unknown and possibly germ-contaminated hands. Or, perhaps it is Mercedes’s housework routines, especially her household cleanliness standards and practices. Because Mercedes works outside the home, she is often short on time and frequently washes her clothes (by hand) first thing in the morning, so they can dry through the day. Contact with cold water is considered potentially illness-inducing by many Andean people, but the shock to the system that occurs when one throws ones’ hands into icy cold water first thing in the morning is especially dangerous and debilitating. But Mercedes has no choice as she must be at work by 8:00 a.m. Mercedes’s mother also worries that her



daughter’s penchant for clean and polished wooden floors might be to blame. Most older houses have aging wooden floors that are polished with kerosene to keep the wood looking conditioned and to keep down fleas. However, the smell of petroleum lingers in the air for days. According to her mother, Mercedes polished her floor several times a week, exposing her frequently to body-weakening toxic chemicals. Mercedes, however, is convinced that her lupus is linked to something far less pedestrian. A few years before she was diagnosed with lupus, Mercedes began to participate in a conservative Catholic movement called the Neocatechumenal Way; her participation became more significant after she was diagnosed with lupus. While Roberts (2006) reports that in Quito many Catholics are dismissive of “Opus dei fanaticism,” in far more conservative Cuenca, where the Catholic Church reports its highest membership, the Neocatechumenal movement seems to be thriving. Neocatechumanism is an evangelizing movement that emerged in poor neighborhoods in Madrid, Spain, in the 1960s and was officially sanctioned by Pope John Paul II in 1990. According to the official Vatican Web site, the movement started with a Spanish painter Kiko Argüello who, in the midst of an existential crisis, “discovered in the suffering of the innocent people the awesome mystery of the crucified Christ which is present in the ‘least’ of the earth” (The NeoCatechumenal Way). As explained to me by Ecuadorian participants, the goal of Neocatechumenals is to achieve salvation through everyday practice by incorporating scriptures into daily life. The Neocatechumenal movement focuses on “post-baptismal” catechism by creating small learning groups or “communities” within parishes, which meet two to three times a week to discuss Bible passages with an eye toward finding wisdom in the Bible for contemporary life. Several of the women I interviewed participated in the movement and found it crucial to providing meaning for their illness experiences. Mercedes believes that before she joined the group, she was most certainly “bound for hell.” Her sins were primarily anger and resentment. She fought often with her husband and his extended family, which has been of little help to her since his disability. She was filled with “resentment” for “being out in front all alone.” Through her participation in the Neocatechumenal movement, she has a new interpretation of her life and she now believes that her sufrimiento, including her husband’s incapacity to work, her lupus, and even her daughter’s failed marriage, are “gifts” from God. According to Mercedes, God has a “complete plan” for all and “conversion” to a truly Christian way of life “doesn’t come free.” Suffering is an essential part of learning to abandon selfishness and sin. Mercedes believes she has been specially chosen by God to suffer, because he loves her and wants her “conversion” to be “complete.” Her challenge is to recognize the gift of her suffering and to make her everyday life a recognition of that gift. Although Mercedes readily offers up this interpretation (and did so in two different interviews spaced a year apart), when I asked her to explain the



concept of a “gift from God” and questioned why God sent her such heartache, if he were a loving God, she was surprisingly honest about her doubts. Nodding her head to my questions, she admitted that she often had trouble understanding the idea that God brings suffering. In 2005, she pointed to the devastating tsunami that ravaged South Asia and admitted to me that she was having difficulties reconciling why a loving God would create such horrific destruction and cause so much human suffering. Yet, she continues to receive great comfort from her Neocatechumenal participation and credits the group with saving her life and her soul.

The Tragic and the Messianic Chronic illness ruptures the everyday, removing people from the world of the well and placing them into the undesirable world of the “unwell” (Good 1994; Sontag 1990; Stoller 2004), where important meanings about life are questioned and renegotiated. Suffering with a lifelong illness is fraught with ambiguity, lupus more so than most, and people struggle to find some explanation for what is happening to them (Honkasalo 2001). The fact that Ecuadorian women’s narratives are not consistent and uniform should not come as a surprise. Williams and Healy (2001) suggest that we consider thinking in terms of constructing “explanatory maps” from illness narratives, highlighting the myriad directions that narratives can take rather than focusing on the notion that a coherent pattern ought to emerge either organically or analytically from narratives. In emphasizing this point for the “banal” condition of headaches among Peruvian women, Darghouth and colleagues (2006: 17) write that women’s narratives “come to speak of troubles that cannot be conceptually confined to the boundaries of the body, and, therefore, bring together personal and interpersonal spheres of existence and suffering.” Carmella’s and Mercedes’s narratives, and the ways in which they use the concept of sufrimiento, provide ample evidence for how illness narratives become embedded in dynamic life stories. Both women discuss their suffering not as something that is limited to their lupus or that began with their diagnosis, but rather as an expansion of a series of difficulties that have plagued them throughout their lives. Lupus has forced Mercedes to reexamine how she has reacted to her lifetime of hardship, leading her to embrace the Neocatechumenal interpretation of suffering. For Carmella, sufrimiento provides a well-worn idiom through which she can position herself as blameless, making her experiences less strange and more acceptable, both to herself and to others. When Mercedes discusses her lupus, she most often expresses a classic “messianic” interpretation of her suffering; she sees it as linked to a larger body of knowledge about the order and meaning in all human experiences (Escalante 2006). According to Escalante, messianic interpretations seek to uncover a rationale for the human experience of suffering although, as Mercedes herself



hints at when she wonders about the tsunami disaster, sometimes the meaning may be obscure and difficult to understand (2006: 7). From a messianic perspective, human suffering, like all experience, is part of an irrefutably logical and often divinely inspired system in which punishments, rewards, or reparations are meted out based on some purposeful judgment. But, holding fast to any interpretation of illness is difficult, and Mercedes struggles very hard to make her sufrimiento serve an obvious purpose. She is an intelligent woman and seeing her lupus as a “gift” from God, while surely a comfort to her, is not always easy. Sometimes she seriously ponders her mother’s theories about dirty money or chemical intoxication and she makes snide and sarcastic comments about the “prizes” she has “won.” I read these comments as a sign of her internal struggles to come to terms with the logic of her very ambivalent “gift” of lupus. Mercedes is openly troubled by the explanation that a God who loves could also cause so much suffering for her and for countless others. Yet, she persists most often in explaining her own suffering as emanating from a loving God. Her sufrimiento now has a distinct purpose, to bring her closer to God. Carmella, who is Catholic but not a Neocatechumenal, speaks of sufrimiento not as a gift but a burden, or perhaps an outcome of a lifetime of burdens. Carmella does entertain some messianic interpretations of her condition, but these are far from comforting since they involve interrogating her own moral behavior and questioning whether she is being “punished” rather than rewarded (as Mercedes might see it). But the notion that Carmella’s suffering comes as a punishment for her own sins, while it is an idea she cannot abandon, is also one that she will not fully accept. In the end, her sufrimiento appears less amenable to obvious messianic interpretations, as it is not a logical outcome of past events nor does it lead to some higher purpose (Escalante 2006). Carmella’s suffering most often sounds fully tragic, as she has no obvious explanation for her fate. Carmella never indulges in discussions of how the experience of having lupus may provide her with some reward or benefit, practical, spiritual, or existential. She does not think that she has a lesson about life to learn through her illness, nor does she think lupus has made her a better person, a common “messianic” North American trope about chronic illness (Ehrenreich 2001; Miles, forthcoming). But that does not mean that her illness experience is meaningless. By using the idiom of sufrimiento, Carmella works to connect her ambivalent and stigmatizing experiences to a set of well-understood life conditions and admirable existential qualities that always, or should always, provoke sympathy if not empathy. Sufrimiento is something that women, like the Virgin Mary, experience because they are left vulnerable to punishing social and emotional forces. Carmella’s own sufrimiento began when she was rejected by her family, endured through her difficult married life, and reached almost unbearable levels as her daughter then she fell ill. Implicit in evoking sufrimiento is the idea that feeling deeply the rejection and disappointments and pains of her life is, in itself, a description of a moral position. Lupus was not the cause of sufrimiento either



for Carmella or Mercedes, and although it may have intensified it, their lupus was integrated into a lifelong story of sufrimiento—one that starts in both cases when events took a serious turn that blatantly exposed the raw vulnerabilities of each woman’s social, economic, and personal lives.

Conclusion I have attempted to position my analysis between two sets of literature in medical anthropology. On the one hand I have argued, following Saris and Bourdieu, that there are important shared conceptual structures that frame and position discourses; to some degree these transcend individual experiences. In particular, the idiom of sufrimiento indexes potent Ecuadorian understandings of gender filtered through the lens of Catholicism. For better or worse, neither Carmella nor Mercedes can speak of their own illness experiences without making reference to the moral discourses of pain and reward inherent in Catholicism and elaborated in the concept of female sufrimiento. Both women contemplate their life experiences through a lens of moral reckoning, probing their past and present behaviors, questioning what others might be thinking, and trying to position themselves as worthy, to themselves and to others, of having their suffering recognized as “real” sufrimiento and therefore understood and sanctioned. Sufrimiento may be a double-edged sword, as it provides a context through which meaning can be shared and understanding reached, while its associations with a kind of moral righteousness can provoke doubt and insecurity. Both Carmella and Mercedes struggle emotionally with the moral ramifications of what they think suffering implies. The other important concept from medical anthropology that I engage here is social suffering, which stresses how the forces of social and cultural inequality can create vulnerability. My intention has been to demonstrate that discourses are both “institutionally” molded and connected to structural dimensions that create vulnerability. While it is a biological and statistical fact that women are significantly more at risk for lupus, those facts do not explain or mitigate the particular kind of social suffering that comes to working-class women who have lupus. Women in Ecuador seem to know this and they understand their experiences in ways that speak very clearly about their structural vulnerabilities. Carmella struggles with the shame of her husband’s painful and ugly rejection and abandonment, and the financial blow his removal from the home has caused, while Mercedes wonders when she will stop “winning the prizes” that always seem to mean more work and worry for her. I had the impression that Mercedes would have liked many years ago to send her husband home to his family for care, more or less abandoning him in the same way that Carmella’s husband rejected her, but as a woman she did not have the same opportunity. Carmella and Mercedes both struggle financially and are terrified of losing their jobs since they are the sole income earners in their households. Having lupus



has exacerbated the precariousness of their financial situations and seriously constrained treatment options. They can only afford to use the limited and inconvenient services provided by the Social Security hospital clinic, getting up before dawn to stand in line. Their class and gender positions play no small part in their experiences of illness and suffering described here. For working-class women in Ecuador, a diagnosis of a chronic illness, particularly one as difficult to manage as lupus, can take a woman’s life literally to the brink of physical, emotional, and/or economic disaster. Hard decisions must be made every day about how to conserve resources and care for children and husbands while taking care of one’s own, not insignificant, health needs. As the primary breadwinners in their families, Carmella and Mercedes might seem to be particularly vulnerable, yet their illness narratives are not fundamentally different from those of other women who had somewhat more stable family relationships or less precarious financial situations. Most women battled depression, and they felt that lupus brought with it untold losses including their looks, their vitality, their jobs or careers, their boyfriends or husbands, and, most sadly, their abilities to care for others. Many women also expressed guilt and shame for burdening other family members with their illness, and some wondered about the long-term effects that their illness has on their children’s personalities and happiness. Women’s visions of their lives and futures have been dramatically altered by having lupus, their material conditions challenged, and their personal relationships strained, in some cases to the breaking point. While the struggle for meaning has no simple answer, for who can really explain the “why me?” of something as ambiguous as lupus, the symbolic value of sufrimiento lies in its ability to dispel in part the emptiness of the tragic and to remind women, and those close to them, that their suffering is not without some social significance. NOTES

1. Record keeping in general is very poor in Ecuador and there are no statistics on morbidity of mortality for lupus. Lupus mortality is probably “hidden” under statistics for kidney or coronary disease as many lupus deaths are attributable to other proximate causes. 2. Roberts argues that in Quito most Ecuadorians today practice a “baroque” Catholicism (Roberts 2006). Roberts describes baroque Catholicism as one that fosters personalistic relationships between individuals and the divine, rather than strict adherence to sanctioned orthodoxy and bureaucratic rules. So, for example, Roberts explains, despite papal bans, Ecuadorian in vitro fertilization doctors feel little contradiction between their faith and their occupations, and they interpret their work as being well within their understandings of God’s relationship with man. In this pragmatic Catholicism, individuals are free to interpret their own actions and life events within a broad framework that presumes a certain flexibility in the relationship between humans and the divine. 3. There is now an extensive literature in medical anthropology, much of it focused on the Andes, that links female suffering, bodily distress, emotions, and morality (Tousignant 1989; Tapias 2006; Darghouth et al. 2006). While the specifics of how



bodily distress and “morality” intersect differs considerably from place to place, there is a significant body of work that suggests that women (and not men) in the Andes are prone to a number of illnesses whose origins lie in the distress caused by unsatisfactory social relationships, the sorrow of unfulfilled expectations, or the emotional hardships of unrelenting poverty (ibid.). In some cases the moral laxity of others sickens women who depend upon them (Tousignant 1984; Darghouth et al. 2006) while in the case of nursing mothers in Bolivia they face moral disapprobation when their own anger (caused by conditions of social suffering) spoils their milk and sickens their children (Tapias 2006). Taken as a whole, this literature affirms the connection between women’s bodily distress, their social connections to others and concepts of interpersonal morality. 4. The IESS system is generally underfunded and mismanaged and patients complain of long lines, inabilities to see their physicians, poor supply of medications, and unhelpful hospital staff. 5. I agree with Allen Young (1981) who wrote that the ill often have multiple ways of thinking about their conditions and that it is not always possible to connect all of their negotiated thoughts into a single coherent narrative.

7 VVVVVVVVVVV Why Women Don’t Die in Childbirth Maternal Survivorship in Badakhshan, Tajikistan K Y LE A L A INA LIESE

The conventional way to explain maternal mortality is to link maternal health

with women’s access to lifesaving obstetric care. When maternal complications arise there is little doubt that obstetric medicine including caesarean sections, vacuum and forceps-assisted deliveries, save women’s lives. This line of thinking governs the assumption that comprehensive emergency obstetric care (EOC) is responsible for low maternal mortality in wealthy countries, where less than 1 percent of the global distribution maternal deaths occur (AbouZahr 2003; Miller et al. 2003; Paxson 2005; Thaddeus and Maine 1994; Paxton et al. 2003, United Nations Children’s Fund 2002).1 Meanwhile, many global health profession-

als assume barriers that keep women from accessing advanced obstetric care (e.g., poor roads, socio-religious practices, poverty, unskilled clinicians) are root causes of high maternal mortality ratios in the developing world.2 Policies to reduce maternal mortality by narrowly on EOC define the causes of maternal mortality in the developing world as primarily episodic to the birth event. However, I will argue that advanced obstetric care to treat complications is an insufficient strategy to reduce high levels of maternal mortality because it does not address what is causing women to experience such high rates of pathological pregnancies. Instead, I will argue that certain social structures and practices influence women over the course of their lifetimes, irrespective of access to EOC. These chronic risk factors result in higher rates of life-threatening obstetric complications in some societies and lower complication rates in others. As such, a chronic causal model of high maternal mortality provides an explanation for the disparity in MMR not only between rich and poor countries, but also between countries that suffer similar structural inequalities, including inaccessible essential obstetric care. Although women in poor countries with high MMR have less access than women in rich countries with low MMR, many poor countries achieve low levels of MMR without advanced maternity health care systems. For example, Afghan




women in the mountainous region of Badakshan suffer the highest maternal mortality ratio (MMR) in the world (6,507 maternal deaths per 100,000 live births) (Bartlett et al. 2004).3 Their lifetime risk of dying in childbirth is 1 in 3 (ibid).4 However, across a narrow river not sixty feet wide, a woman’s lifetime risk of dying in childbirth decreases by a factor of fifty-three. On the northern bank of the Pyanj river, in the portion of Badakhshan controlled by the poor, post-war country of Tajikistan, women endure a maternal mortality ratio of 292 maternal deaths per 100,000 live births CI(161, 420) and a lifetime risk of dying in childbirth of 1 in 115 CI(1:208 to 1:80).5If EOC is key to the reduction of maternal mortality, then we would expect that the Tajik-controlled portion of Badakhshan (referred to in Tajikistan and in this chapter as GornoBadakhshan or GBAO) either have similarly high maternal mortality to Afghan Badakhshan, or else quality EOC. I provide a theoretical framework to explain the unexpected survivorship of women of reproductive age in Tajikistan compared to their counterparts in neighboring Afghanistan. Current causal theories of maternal mortality cannot explain the vast disparity in maternal health outcomes between these neighboring populations. Based on an episodic model of maternal risk, we would expect that in Tajikistan, where there is relatively low maternal mortality (170 maternal deaths/100,000 live births), obstetric services are good. Likewise, this model predicts that because it has the highest MMR in the world, access to obstetric care must be exceptionally poor in Afghan Badakshan. However, data presented in this chapter suggest otherwise. My findings indicate that the locus of risk for high maternal mortality may not be in treatment of individual women’s complications, but at the population level where shared social practices result in chronic risk for complications over the course women’s lives. My findings rely on data from hospital records, 220 semistructured interviews with ever-married Tajik and Afghan women, a district-wide maternal mortality survey using the sisterhood method, and seventeen months of participant observation in the isolated mountainous regions of Gorno-Badakhshan, Tajikistan, and Badakhshan, Afghanistan.6 These data suggest that an episodic model of maternal risk that privileges care at the birth event belies the impact of long-term social and physiological chronic conditions on maternal outcome. I argue that specific social structures established during the Soviet era provided Tajik women with greater resilience to the stresses of poverty and chronic subjugation that result in life-threatening obstetric complications. In 1925, when the border between Afghanistan and Tajikistan closed, women on either side were exposed to similar risk factors (extreme geographic and political isolation, poor agriculture and nutrition, poverty, etc.). However, Soviet ideological expansion into the peripheries of Tajikistan resulted in interventions and practices that increased the visibility of women and women’s reproductive health in the public sphere. Although the collapse of the USSR and subsequent Tajik Civil War (1992–1997) left this



once-prized healthcare system in utter ruins. Hospitals once capable of providing EOC became plagued by debilitating shortages of electricity, drugs, and qualified physicians. Despite this, the sustained efficacy of low-cost maternal health structures and practices support a “chronic” causal model of maternal mortality. In particular, Soviet legislation of marriage laws, compulsory education for girls, and pronatalist agenda requiring reproductive health services have increased the visibility of Tajik women throughout their reproductive years in ways that protect them from the reproductive risks associated with chronic poverty, religious conservativeness, gendered inequality, poor health care, and violence. In contrast, women in Afghan Badakhshan have been made increasingly invisible in ways that increase their vulnerability to these shared risk factors.

Anthropology of Reproduction and the Episodic Model Maternal mortality is the sort of problem that lends itself to the anthropological perspective of chronicity, since all the complex factors that go into life and death are also parts of these tragic births. Women who die in childbirth are likely to suffer throughout their reproductive lives from limited access to family planning, education, economic equality, personal agency, and political freedom (Barnes-Josiah et al. 1998; Janes and Chuluundorj (2004); Miller et al. 2003; Rizvi et al. 1999; Thaddeus and Maine 1994; Wall 1998; Shen and Williamson 1999; Stokoe 1991; Sundari 1992; Turshen 1999). However, the public health approach to the topic often stakes out the opposite point of view—explicit skepticism with chronicity—and focuses instead on treatment for complications that arise during the birth event (Maine and Rosenfield 1999; Paxton et al. 2003; Thaddeus and Maine 1994; Fortney 2001) . The episodic causal model for maternal mortality focuses primarily on the birth event, arguing that a pregnant woman either “does or does not develop a serious obstetric complication” and her survival depends on adequate obstetric care, not her overall resilience. In this model, women’s maternal risk pertains to the nature of the birth event, and therefore cannot be “predicted or prevented” prior to this episode (Maine and Rosenfield 1999). In safe motherhood studies, an episodic causal model is contrasted with an additive causal model of maternal mortality that assumes that maternal death is the result of the sum of insults to a woman’s health (e.g., poor nutrition, repeated childbearing, domestic violence, or hard physical labor). The episodic causal model is of particular interest to the anthropology of reproduction for two main theoretical reasons. First, it suggests a shift in safe motherhood studies from risk screening to accepting “every pregnancy faces risk” (WHO 1998). This approach conflicts with the paradigm that anthropologists of reproduction have advocated since the 1970s: That childbirth and reproduction are normal and natural processes, pathologized and technologized by biomedicine (Davis-Floyd 1992; Davis-Floyd and Sargent 1997b; Jordan



1978/1993). The implication of this perspective is to oppose the increasingly global trend of neglecting low-cost, large-scale public health initiatives in favor of sophisticated and expensive technologies of “limited practical value” (DavisFloyd and Sargent 1997b). And yet, in our critique of the technocratic birth and illustration of safety of planned, midwife-attended home births in many countries (Davis-Floyd and Sargent 1997a, 1997b; Goer 1995, 1999; Jordan 1978/1993), we have largely ignored those births that are, in fact, pathological. However, maternal mortality may be a unique global health problem in that the social context of childbirth can play an equal if not greater role than structural inequalities in determining whether women and their families will access treatment during an obstetric emergency, even if it is available. For example, Nicole Berry (2006b) questions the public health assumption that the availability of quality biomedical care can eradicate maternal mortality in the developing world. Despite the high risk of maternal death in rural Guatemala, Berry found that women and their families resisted seeking biomedical intervention because it disrupted the social benefits of a home birth as a time to establish and strengthen essential kin networks. Furthermore, religious and cultural values supported a birth with a traditional birth attendant (TBA) and so the women and families in her study continued to prefer home birth over hospital birth. These findings are echoed in Cameron Hay’s (1999) work on maternal mortality in Indonesia, where sociocultural forces contributed to the local perception that the biomedical clinic, despite its availability, did not represent the most appropriate care in an obstetric emergency. These studies demonstrate the saliency of sociocultural structures and practices on maternal health outcomes, especially during an obstetric emergency. If health-seeking decisions are anchored to the wider social context, it follows that this context may deeply influence women’s experiences throughout their reproductive lives, perhaps even determining the risk factors that may pose a threat to maternal survivorship. One way to demonstrate the chronic underpinnings of maternal risk is to compare the social structures and practices associated with maternal mortality and maternal survivorship across the TajikAfghan borderland in Badakhshan.

Maternal Mortality in Badakhshan Afghanistan Since the late 1800s, the remote region of Badakhshan has been divided between distant empires by the narrow Pyanj River. When the USSR officially closed the international border in 1920, the people living on the northern side became Muslim citizens at the periphery of the atheist Soviet Union, eventually developing a nationalist “Tajik” identity and reaping the benefits of Soviet development. To the south, Afghan Badakhshan became the most unreachable province of the war-torn kingdom of Afghanistan, where a heavy-handed version of Islam would eventually spread by the force of the Taliban.



For decades, people of Afghanistan suffered foreign invasions, civil war, repressive theocratic regimes, droughts, famines, social chaos, and infectious disease epidemics that have left the country’s infrastructure in a state of neartotal disrepair.In particular, high in the Pamir Mountains, the northern province of fghan Badakhshan is the poorest and least accessible province in one of the poorest and least accessible countries in the world. Even as medical aid money to Afghanistan dramatically increased with the fall of the Taliban, the inhospitable climate and severe terrain of Badakhshan continually frustrate the plans of aid workers to build and maintain a basic network of health care. For a woman with an obstetric complication in the Darwaz district of Afghan Badakhshan, it is a minimum of a twelve-day foot journey on narrow donkey trails to the provincial capital, which houses the only hospital. Furthermore, this journey is only possible for a few months of the year. Villages are tucked away in the high and narrow valleys of the Hindu Kush, and Pamir mountain ranges are reachable only by foot or donkey during months that dirt paths are not blocked by the frequent avalanches or landslides. In the border district of Darwaz, where the majority of ethnographic data for the study was collected, villages are small (ranging between 250 and 2,000 people) and sparsely distributed along the Pyanj and adjoining tributaries (Aga Khan Foundation Afghanistan 2004). Traversing these paths is even more difficult for women (and pregnant women in particular) who would be required to wear the cumbersome and vision-obscuring burqa. A woman in this village explained, “Why would I try and die to reach the hospital? It is better that I just die at home. It is God’s will, in any case.” Although the region is sparsely populated, the extreme winter weather and topography create shortages of homes and land. Because alternative means of producing income are so limited, Badakhshan is Afghanistan’s leading grower of poppy for opium and heroin production. One report suggests that addiction rates are as high as 20 percent in some districts (Theuss 2006). To pay off opium debts to drug lords, addicts become traffickers, dangerously carrying drugs across the border into Tajikistan, where they will eventually travel into Eastern Europe. In addition, stories of addicts marrying their young daughters to drug lords to repay debts were discussed in hushed tones among women in Darwaz. However, opium users are not only men. I met one old widow who was known by the whole village to be an addict. Her husband had introduced her to opium after he returned from Iran. Since he died fighting the mujahadeen, she visits other women’s homes to beg for money to feed her addiction. Opium is also smoked medicinally among women to manage the pains of childbirth and administered to children to manage respiratory illnesses. One woman explained that when her newborn son was having trouble breathing, the tabib (religious healer) came and blew smoke into his mouth, saving his life. The women in the room sympathetically insisted that opium helps babies and infants to deal with the pangs of hunger and cold. Food scarcity is increased during winter months when trade routes are blocked by snow.



Healthcare workers interviewed in the provincial capital Feyzabad suggested that chronic malnutrition underscores maternal mortality in Badakhshan. Hemorrhage is the most common obstetric complication that leads to maternal death throughout the world. However, one study (Bartlett et al. 2005) found that women in the Ragh district of Afghan Badakhshan were most likely to die from obstructed labor, which only accounts for 8 percent of maternal deaths worldwide. Obstructed labor results when the head of the baby cannot pass through the pelvis of the mother. Without a cesarean section, labor can go on for days, exhausting the mother and leading to the rupture of the uterus and maternal death. Obstructed labor in the developing world is most often associated with young age at marriage, early childbearing, and poor nutrition (Liskin 1992). In Ragh, , however, mothers who die from obstructed labor are neither very young nor first-time mothers. In fact, they are most often women who have had more than of six pregnancies (Bartlett et al. 2005). One local doctor suggested that the local practice of purdah (wife seclusion) kept women sequestered inside their homes and fully covered at all times, depriving their skin of the contact with the sun, which is vital to calcium absorption and healthy bone density.7 . The maternal risk of this deficiency is exacerbated by limited bioavailablity of essential nutrients in the mountain terrain and repeated childbearing and breast-feeding, which further depletes osteological stores of calcium (Kovacs and Kronenberg 1997; Walker et al. 1972). The additive effect of these chronic micronutrient deficiencies is that by the sixth or seventh birth, their bones are so weakened that their pelvises have contracted, obstructing the passage of the baby. Although pelvic contraction during pregnancy as a result of osteoporosis is rare in clinical observations (Khovidhunkit and Epstein 1996), the compounded chronic malnutrition and multiple childbearing of women in Afghan Badakhshan may be sufficiently extreme (Liese 2009). Further data from across Badakhshan are necessary to demonstrate more conclusively how specific social structures and practices, over the course of a woman’s life, increase women’s risk of of specific obstetric complications. Repeated childbearing and extreme seclusion are practices with deep social and religious foundations but very little evidence is available to scholarly or local communities as to their physically detrimental effects. When a surgical facility was operational in Ragh, there were on average ten cesareans per month. Given how small this community is, the frequency of cesareans to save women’s lives further reinforces the need to address underlying causes. Addressing these structures (e.g., providing vitamin supplements, encouraging more exposure to the sun) has the potential to reduce maternal mortality at a much lower cost and likelihood of sustained success than developing and maintaining the infrastructure for EOC. Even now, the surgical clinic at Ragh can operate only when insecurity and the disincentives of living in an extremely isolated, conservative, and poor



environment do not keep qualified female obstetricians from practicing there. However, if chronic malnutrition stemming from a complex of social and economic circumstances underlies maternal risk, then EOC at a local clinic is a “band-aid” approach to treating maternal mortality in the region. EOC will save the lives of some women, but it is an extremely costly and challenging strategy that cannot address the chronic factors that place women at risk for maternal mortality over the course of their lives. If instead (or even in addition), programming prioritized the chronic malnutrition and subjugation of women, the demand for EOC may be reduced and many maternal deaths may be prevented. My data suggest that even if most women in Afghan Badakhshan had decent transportation, facilities providing EOC would be quickly overwhelmed and incapacitated. I spent two months in the spring of 2007 observing the doctors, midwives and patients in the maternity wing of the Feyzabod Provincial Hospital, the only fully-equipped hospital in Badakhshan. I wanted to understand in what ways maternal mortality in Badakhshan was a matter of access to health care and what we could learn from the women who did actually make it to the nearest tertiary care facility. In all likelihood, the women who made it to the hospital would have died otherwise. Indeed there were many cases of women dying en route or arriving in a state too grave to be saved. As such, these women’s stories were windows to the actual risk factors and constraints faced by Badakhshani women who present with obstetric emergencies. The hospital in Feyzabod was an unimpressive collection of white-washed buildings on the bank of Kokcha River, adjacent to the Old City section of Feyzabod. Within the maternity ward the six women doctors talked directly with patients’ husbands, often letting their headscarves fall completely from their hair. However, their burqas all hung together on a coat rack in the lounge and the moment they came to the door of the maternity ward, the veil was pulled over their faces. The doctors in the maternity ward saw themselves playing roles that extended beyond the bodily care of their patients. They understood the larger social context in which Afghan women lived, worked, married and mothered and often made medical decisions weighted heavily by these influences. One day in May of 2008, a 24-year-old woman wrapped in a pale blue headscarf and green patterned dress presented in 2nd stage labor at the Feyzabod District Hospital. When the triage midwife examined her, the woman admitted that she had been leaking urine for some time. The midwife saw that she had a vesicovaginal fistula, which was actually caused during her first pregnancy, three years ago. At that time she had been in labor for four days without relief until her husband was finally able to organize neighbors to help carry her to the hospital. By then, she had already gone into hemorrhagic shock. The prolonged labor caused her uterus to rupture but she arrived at the hospital in time. The uterus was repaired and her life was saved. Before the surgery to repair her uterus her husband asked that the surgeons also perform a tubal ligation because he was



afraid that she was so close to death, but the surgeons refused. “How could we?” one surgeon remarked incredulously, “She didn’t have a son. If we had done it she would have been left and her husband would take another wife.” After she was released from the hospital she found that the same obstructed labor that caused her uterus to rupture had also caused a fistual. However, she did not return to the hospital because she was ashamed and the trip was far for her to make from her village. Now she returned to give birth to her second daughter and to have the fistula repaired. The husband, concerned that the next pregnancy could be more dangerous or damaging, has repeated his request for her to have a tubal ligation. Again, the surgeon refused saying, “She doesn’t have enough [children] and if she doesn’t have enough her husband will take another wife. Maybe if she comes again [for a third delivery] we will advise a caesarean with a tubal ligation.” Motherhood plays such a vital role in establishing women’s autonomy and security in the home that sterilization was not considered for women with less than three children, unless her life was in danger. These reproductive disruptions (Sargent & Cordell, 2003) are known to have multidimensional negative physical, social and psychological effects of on wives and marital unions in Muslim communities (Al-Krenawi 1999; M. Inhorn 1994, 1996; Sargent & Cordell 2003). The risk a second wife, or worse, a divorce, could pose to a woman’s health and livelihood (not to mention those of her children) loomed large on the doctors’ consciences. Each patient that went into the operating room for delivery is one that would likely have died had she not made it to the hospital. The doctors reported that they did, on average, two to three cesareans a day, in addition to other surgeries such as tubal ligations, fibroid removals, hysterectomies, fistula repairs. Most of their patients came from rural, outlying areas and it seemed the greatest challenges to the doctor’s practice was how long it took patients to reach them and how many other patients required the same immediate care. Dr. Rahila was primarily an obstetric surgeon with an almost typical direct and aggressive manner, “Most of these women, they come too late. They stay at home in labor for three, maybe four days. When they come, they are bleeding inside. They are bleeding outside. Their uterus has ruptured and they have a fistula. They loose too much blood and maybe they are already dead.” The women that made it to the hospital in time were fortunate that a staff of trained surgeons, like Dr. Rahila, and midwives were able to treat them with the appropriate skills, supplies and compassion. Unlike the situation in the hospital in Darwaz Tajikistan, standards of hygiene in Feyzabod District Hospital, especially in the operating theatre, were strictly adhered to. One of the midwives took the time to walk me through the steps of sterilizing instruments for the operating theatre and delivery room, also pointing out how the bodily waste was disposed of. The hospital staff and administrators appeared proud to show me their blood bank, which opened in 2006 with USAID funding. It is highly unlikely



that the relatively high standards of care were possible to maintain when the Taliban controlled all supply routes to Badakhshan. However, since 2001 when the Taliban fell, USAID and other donors have made substantial investments in training, staffing and supplying the hospital in Feyzabod. However, despite these relatively high standards of care, the doctors were still lacking in certain drugs or supplies. Occasionally, space in the operating room was in short supply. Early one morning, I was shadowing Dr. Rahila in the triage room when a 25-year-old woman, Dila, entered and explained that she was pregnant with her tenth child and had been having fits (seizures). Dr. Rahila immediately took her upstairs to the ultrasound room and took her blood pressure—it was 200/120. Dila’s fits, hypertension, swollen legs and high protein in her urine all pointed to eclampsia. The ultrasound showed that the baby was only 27 gestational weeks. Dr. Rahila told the patient that she needed to have a cesarean section today. I asked what would happen to the baby and was impressed to hear Dr. Rahila say, “It does not matter; this mother’s life is most important. The baby is 27 weeks, maybe he will live and maybe he wont. That is in God’s hands.” Dr. Rahila had a fibroid removal scheduled in a few minutes and decided that she would do that surgery quickly and then the cesarean on Dila. Unfortunately, when she opened up the fibroid patient she found three fibroids the size of baseballs attached to the woman’s ovaries and extricating began to take a long time. It became clear that Dila’s eclampsia could not wait any longer so the orderlies set a make-shift second operating bed for Dila next to the fibroid patient. The operating bed was made out of a table used to shelf supplies in the operating room and was covered with a sheet. However, there was only one lamp in the operating room, as well as only one heart monitor, intibator, and anesthesiologist. Luckily, there were two surgeons in the ward that day. I had been observing the fibroid surgery from the foot of the patient when Dila walked into the operating theatre and noticed the two beds, one for her and one with a woman on it who had her abdomen opened. A midwife hurriedly directed her to take off her dress and lie under the sheet. Dila was obviously frightened, anxious and confused. Since I was the only one in the room who was not doing something important, I went over to help Dila get on the table and keep her company till the surgery started. It turned out that Dila was from a village about two hours from the hospital. When she had fits, a sign of eclampsia, her mother-in-law called a traditional healer who attempted to beat the bad spirits out of her with his hand. Her eldest child, a girl, was twelve years old and her youngest child, also a girl, was only ten months old. She was hoping this baby would be a boy. Staring at the adjacent operating table, she asked me what was going on with the other woman. I tried to reassure her by saying that the other woman was having a different kind of surgery, but that her surgery, the cesarean section, was really very simple and common. I told her that I had watched the doctors do dozens of them and they always came out fine. She would be awake and okay in no time.



The make-shift surgery ran into problems from the start. The vitals monitor was removed from the fibroid patient and put on Dila, but the electrical cord couldn’t reach. The anesthesiologist broke two teeth when he intibated Dila. Because the only lamp was being used in the fibroid surgery, the doctor treating Dila was having a hard time seeing properly and asked me to open the windows. This was difficult because of how crowded the operating theatre was and with the windows open the sound of mortars exploding was loud. Once the baby was out, he was placed on a mat on the floor and a midwife was assigned to him. He was blue and not breathing. Feeling like I was in the way in the overcrowded room, I went to the corner and saw that the midwife was having difficulty getting the baby to breath. She rubbed his back, suctioned his nose and throat and all that came of that were periodic little gasps, though his heart beating. After a few minutes the midwife stopped trying to resuscitate. I asked her if there was an oxygen bag and she just looked at me and shrugged. I suggested rescue breathing on the baby but the midwife just shrugged again. Finally, I offered to do rescue breathing myself and after just a few breaths, the baby gasped and let out a cry. When the surgeon saw I was rescue breathing, she ordered a nurse to get the oxygen machine. After a few minutes, a machine appeared but it didn’t work. The midwife then carried the baby out of the operating theatre to a room with an incubator. In the hallway we passed a man who appeared to be about seventy-years-old and the midwife told me that he was the baby’s father. The man stood at the doorway of the room, watching me plug in the second oxygen machine. I said to him, “This is your son.” He stared at me for a moment and softly said, “Thank you.” After the incubator heated and the oxygen was rolling, I went to check on Dila’s progress. The surgeons had trouble controlling some of the bleeding but said she was stable. Because it was getting late, I decided to leave the hospital and return to my guesthouse. Later that evening, I returned to the hospital and checked on the baby, immediately noticing that the oxygen had been removed. One of the midwives told me Dr. Rahila had instructed her to remove it. I found a tired looking Dr. Rahila talking to the baby’s father in the hallway. When she finished, she told me the baby was better off without the oxygen. Dila had died an hour before due to complications of the surgery. She left behind ten children. By morning, there were only nine as her youngest son also died. The stories of Dila and her son illustrate that essential obstetric care is not a simple solution to reducing maternal mortality. Biomedical obstetric care is a part of the larger social and economic context in which women live and die, and as such, is not invulnerable to the risks posed by limited resources and socio-cultural norms. It was obvious from the age of Dila’s husband that she was married as a child to a much older man. The fact that she had ten children in approximately twelve or thirteen years (assuming she reached menarche sometime between nine and ten years old) may reflect a lack of education or



family planning. When she began to have seizures, her mother-in-law took her first to a traditional healer, who beat her to remove evil spirits, and then to the hospital. Although she was promptly diagnosed with the appropriate equipment at the hospital, the capacity of the hospital to treat her was inadequate under these circumstances. It is likely the midwife treating Dila’s son, as well as Dr. Rahila, understood the added burden of a premature baby boy on the family, and although I did not ask directly, I suspect both clinicians withheld care intentionally. Essential obstetric care cannot substantially reduce high levels of maternal mortality precisely because high levels of maternal mortality are indicative of other major flaws in a society—gender inequality, illiteracy, and malnutrition to name but a few—that constrain the quality of health women achieve over the course of their lives. Abnormally high levels of obstetric complications cause the abnormally high levels of maternal mortality suffered by women in Afghan Badakhshan. Obstetric medicine in poor countries is too costly to effectively treat obstetric complications if life-threatening complications are the norm and not the exception. The quality of care would quickly collapse due to insufficient resources if more women were able to make it to the hospital. Even if more operating theatres were built, Afghan Badakhshan hasn’t sufficient infrastructure (e.g., electricity, transport to replenish supplies, blood banks) or health care providers (e.g., female obstetricians, midwives and anesthesiologists) to provide the quality obstetric care necessary to manage obstetric complications. The vulnerability of the only tertiary care facility in Afghan Badakhshan reminds us that the causes of high maternal mortality cannot be adequately addressed by treating individual obstetric complications. Instead, we must look at the lives of women before they present with a complication to determine what is causing the high rates of complications.

Maternal Survivorship in Gorno-Badakhshan, Tajikistan It is quite remarkable that in Tajik Badakhshan, hospital records reveal that only three pregnant women in four years died from maternal causes. In fact, only 12.7 percent of Tajik women in my study reported knowing a relative or neighbor who died in childbirth, compared with 60 percent of women just across the river in Afghanistan (Liese 2009). Even more surprising to global health intellectuals and NGOs, however, is that this achievement is not due to advanced obstetric services left from the Soviet era. I was permitted access to the statistics department at the Darwaz District Hospital and learned that out of nearly 750 patients per year, only fourteen cesareans were performed at the district hospital between 2004 and 2007. These data indicate that not only are women surviving childbirth, but also they are not developing the complications that would likely kill them in the absence of essential obstetric care. That women in Tajik Badakhshan have low risk for obstetric complications, despite the poverty



and isolation of the region, suggests that the locus of maternal risk occurs before the birth event. Although not as poor as Afghanistan, Tajikistan was the poorest of the Soviet republics, and following independence in 1991, it suffered a terrible and bloody civil war until 1997. During the war, much of the Soviet infrastructure was destroyed, and warlords seized the central state apparatus. The healthcare system, in particular, fell to pieces as East German and Russian “middle-class” medical specialists fled the country as refugees, never to return. Whole regions, especially the eastern region of Gorno-Badakhshan, faced starvation as opposition forces took refuge in nearby mountain valleys (Akiner 2001; Atkin 1997; Djalili et al. 1997; Driscoll 2009; Roy 1998; Rubin 1998). While the country has had superficial economic recovery since the war, over 64 percent of the population exists on less than two dollars per day (Central Intelligence Agency 2008). Over a third of all men are forced to find work as illegal migrant laborers in Russia and neighboring countries (Olimova and Bosc 2002). In the winter of 2007–2008, Tajikistan declared a state of emergency when its most important hydroelectric dam failed, leaving the entire country in freezing darkness as temperatures dropped to thirty below zero. Reports surfaced of newborns dying in maternity hospitals because they could not stay warm enough. Yet, as noted earlier, maternal mortality in Gorno-Badakhshan is relatively low. Like its counterpart across the river in the Darwaz district of Afghan Badakhshan, the Darwaz district of Gorno-Badakhshan is one of the more peripheral and isolated regions in Tajikistan. By car, this area is between twelve and twenty-two hours from the capital city of Dushanbe, along an unpaved single-lane road that is plagued by avalanches, mud slides, and fatal car accidents. This isolation results in sporadic electrical supply through the spring and summer months, and no electricity at all through the fall and winter. Only 6 percent of women sampled (n = 220) reported access to a generator. Most homes are heated by short wood-burning stoves, although the rocky terrain makes firewood a scarce and expensive commodity that has to be carried in from villages higher in the mountains. Most women and young girls retrieve water from a central well or else gather it directly from the river and carry it home. While 70 percent families have latrines, unhygienic practices put families at risk for infectious diseases. On various occasions, I saw mothers use their bare hands to clean their children’s bottoms after defecating, then rinse their hands in water or wipe them on a towel before going to the kitchen to prepare food. Perhaps unsurprisingly, diarrhea is a leading cause of infant mortality. Chronic food shortages and childhood malnutrition are also common problems for Darvazi families, as the rocky terrain is largely inhospitable to agriculture beyond the basics and supply routes to the capital are often limited during winter months. Most families keep small plots to grow potatoes, tomatoes, green onions, and



carrots. With these, they often eat a watery soup with bread and small amounts of meat, usually from sheep. Darwaz is a conservative Sunni community in a predominantly Isma’ili region, and is supported by the generous aid of the Aga Khan Development Network (AKDN).8 Despite the availability of free education, girls, on average, drop out after eighth grade. The average age at marriage in this study was nineteen years, but as economic conditions continue to deteriorate, marriage age appears to be declining. In part this is because young brides are necessary to meet labor shortages created when men migrate to Russia to find work: 46 percent of women reported their husbands migrating for more than a year at a time. There is a single hospital at the center of the district capital, Kalai-Khumb, which services the entire district and all of the surrounding districts; it is one of two hospitals in all of Gorno-Badakhshan. Perched on the bank of the Pyanj River, the Darwaz district hospital is an impressive cluster of long concrete buildings, each housing different wards, shaded by white mulberry trees. During visiting hours family members carrying food and thermoses of tea loiter around open windows, talking with their relatives. Doctors, nurses and janitors pass between wards, all wearing similar long white coats. The well preserved external infrastructure of the hospital misleads intellectuals and NGO workers into assuming that it still provides the same care as during Soviet times. However since the fall of the USSR, the supplies and resources that sustained the Soviet-quality health care have dried up, leaving a medical facility that is large, but also hollow in terms of the services it can provide. A case I followed during the summer of 2007 highlighted the vulnerabilities of accessible but low-quality obstetric care. For a week, Minoo, a twenty-sixyear-old woman in a bright pink traditional Tajik dress, stayed in the labor ward of the hospital with weak labor pains. She was pregnant with her second set of twins and anxious to get back to her village, concerned that her sister-in-law might not take good care of the other children in her absence. Minoo delivered her first set of twins at home with a TBA and no problems. She squatted on clean and soft mats during the labor, leaning on her sister-in-law for support. Both babies were born healthy and the TBA cut the umbilical cords with a “clean knife”. However, when she learned she was carrying twins for the second time, her TBA insisted she deliver in the hospital. On Friday evening, she finally began active labor. Minoo laid beneath an open window in the delivery room, sweating in the oppressive summer heat, waiting for the akushertka (nurse-midwife) to come and attend to her. The akushertka on duty that night was Sitora, a thick self-assured woman with gold teeth and a long green floral print dress. Also present was Saida, the new, young OB/ GYN who shyly admitted her excitement to see a set of twins being born, having never done so before.



After the first twin was born, I watched as Sitora administered a series of eight injections to Minoo to “hurry the second twin,” adding, “if we wait for her to start contractions again, we will be here all night.” Sitora then instructed Minoo to bear-down and push although it was clear that she was not having a contraction. When Minoo grew exhausted, Sitora slapped her in the face and criticized her for “not trying hard enough” and accused her of “wanting to kill her baby.” When Sitora saw the second twin was a footling breech, she asked the orderly to stand on a stool and push down with locked arms and significant body weight on Minoo’s abdomen. With each push the second twin’s foot pulsed within her birth canal and Minoo’s face crumbled in pain. Finally, Sitora wrapped her hand around the baby’s ankles and pulled. Sitora placed the small, blue baby on the fluid-filled tray beneath Minoo’s bottom while she cut the umbilical cord. Minoo’s eyes fluttered in exhaustion when Sitora twisted both umbilical cords around clamps, and tugged on them to hurry the delivery of the placentas. After thick blood continued to pour from Minoo, overflowing the tray beneath her and another two kidney dishes, Sitora explained to me, without addressing Minoo, that pieces of the placenta must have been retained, causing the post-partum hemorrhage. Having already removed her gloves, Sitora reached a bare hand deep inside Minoo’s uterus while using her other hand to push down on her abdomen. Meanwhile, I noticed that Saida had turned pale. When I asked if she was okay, Saida covered her mouth and left the room. Satisfied that all the clots were removed, Sitora went to the toilet to wash her hand, leaving Minoo alone with me. After twenty-five minutes waiting for her to return, Minoo, exhausted, naked, and covered in blood beneath an open window, asked my help in getting up and getting cleaned up. Although Sitora managed Minoo’s complications (breech and post-partum hemorrhage), the whole ordeal was painful and risky for this young mother as a number of Sitora’s practices directly contradict WHO recommendations (WHO, 2006a). However, Sitora did not wish to cause harm or discomfort to Minoo. When I spoke with her afterwards she explained to me that all of her practices were essential for the most beneficial outcome for Minoo and her babies. She justified her behavior by citing “scientific evidence” from the Soviet era. The incident highlights two main overlapping points: First, that the availability of some medical technology does not necessarily indicate safe and effective advanced obstetric care; and second that despite formal training, Tajik clinicians lack many of the skills expected of “skilled birth attendants”. Tajik nurses rely heavily on relatively simple biomedical technology and interventions (e.g., injections, blood pressure cuffs, anti-biotics), though it was not always clear to me that they were skilled in the mechanisms and purpose behind some of the treatments. The technology appeared more valuable as symbols of Tajik medical modernity in spite of poverty than efficacious as treatments. There was a certain ironic tension between the indulgent use of



oftentimes useless technology in a hospital that oftentimes lacked heat and electricity. Other anthropologists working in post-Soviet maternity centers describe similar relationships between providers, technology and outdated medical knowledge as an outgrowth of Soviet biomedical culture (Chalmers 1997; Petryna 2002; Rivkin-Fish 2005). “Technological intervention is preferred to a noninerventionist approach whenever possible; in this regard, it is sometimes to mothers’ advantage that technology is not readily available,” (Chalmers 1997). Though the risk of a major complication resulting from iatrogenic use of such basic technology was minimal, as Minoo’s story shows, women did suffer unnecessary discomfort and morbidities. The Tajik nurses’ displays and privileging of biomedical intervention create a false image that advanced obstetric care is available and contributing to the lower maternal mortality in Tajik Badakhshan. In actuality, Tajik women are surviving because they have little obstetric need for advanced care. If they had a greater need, meaning they had more life-threatening complications, the medical technology at the hospital in Darwaz Tajik Badakhshan would be insufficient to save their lives. The value of technology in the Tajik model of childbirth leads clinicians to want to modernize in the footsteps of the Western technomedical approach, though they lack the medical knowledge and infrastructure to do so. This is to say that despite the physical infrastructure for emergency obstetric care and the genuine aspirations of clinicians to provide more advanced care, the human capital is missing. Asking a physician to provide essential obstetric care in the hospital was like starting to bake a cake with all the right bowls and pans but no ingredients. While the hospital appears suitable to advanced obstetric care, there aren’t physicians with the skills to perform life-saving care. I once asked the head OB/ GYN, Fauziya, if she had ever performed a Cesarean section and she said, “Yes, two of them. But I was terrified. You know we have no anesthesiologist here. Thank God neither woman died.” The only surgeon qualified to do cesareans in the (AKF) Darwaz hospital left in June 2007 to earn 1500 dollars per month working for an NGO across the border in Afghanistan. Since this is more than twenty-five times his “regular” salary in Tajikistan (about thirty dollars per month, not including small “gratuities” patients are expected to pay for their care), few could fault him. Further, less than a year after replacing Sharofat, who had worked in the hospital for over twenty years, Fauziya also accepted a higher paying job with a private organization in the capital city. When Fauziya left, the standard of obstetric care available in Tajik Darwaz declined further. At least Fauziya was an experienced doctor who had provided basic gynecological and obstetric services to her community for a decade. Fauziya’s replacement was a twenty-six-year-old recent medical school graduate named Saida. Saida married into a family in Darwaz two weeks before she was offered the job as Head OB/GYN for the entire district. She told me that she had not specialized in medical school, but that she was considered a qualified OB/



GYN primarily because she was a doctor and was female. Saida also revealed that she had never actually attended a delivery before taking the position. Her previous experience was working in a blood bank in the capital city. She was equally frightened by the responsibilities and expectations of her as a new bride and physician. Furthermore, the poor living conditions in Darwaz frightened Saida as lived her entire life in Dushanbe, the country’s capital. When I asked Saida what she would do if there were an emergency that required surgery, she shrugged and replied: “God helps.” If Tajik women in Darwaz were developing obstetric complications at a rate even close to their Afghan neighbors, their lack of essential obstetric care to treat the complications would result in many more maternal deaths. The fact that they are surviving and not being treated for obstetric complications, because treatment is largely unavailable, suggests that their maternal survivorship does not hinge on access to the hospital during an obstetric emergency. Given the poor quality of care provided at the hospital, one wonders why women would present there at all. Tajik women, by and large, were proud of the hospital as a symbol of their modernity. In many ethnographies of childbirth, the biomedical facility and biomedical perspective is distinct from the indigenous population’s ethno-etiology of health, disease and risk (Berry, 2006). However, in Tajik Badakhshan the women who worked in the maternity ward were neighbors and relatives to the women who were patients, all of whom were raised with the same Soviet education. As such, the relationships between the akushertka and the patients were very informal, perhaps accounting for some of the abuse of power depicted in the story of Minoo and Sitora. The relationships between patients and doctors were slightly different, however. Women generally spoke of the OB/GYNs in the hospital with a similar pride as they did when they described the “modern medicine” and technology available at “their” hospital. It was clear that women also had a great deal of affection for the doctors. In particular, Sharofat and Fauziya, the former OB/GYN of twenty years and her replacement, were highly regarded for their kindness and compassion. Both doctors lived in Darwaz and had strong personal ties in the community. During my time observing in the hospital I was impressed with how both doctors interacted with patients. During downtime the doctors were indistinguishable from the patients as they all sat together with hunched shoulders on a bench outside the ward, chatting and mindlessly picking at blades of grass or sipping tea. Inside the ward they regularly shared meals and gossip at a long wooden table with the patients, nurses and janitors. I often sat in on consultations where Fauziya would refer to the patient respectfully as “auntie” or “sister” depending on their age. During exams, both doctors appeared to treat patients gently and with respect for their modesty. Perhaps most importantly, they listened carefully to patients when they spoke about their health, without dismissing patient’s concerns or beliefs that their physical problems generated from family conflicts, bad dreams or the ill will of neighbors. Anthropologists



have shown that women’s own intuition about their bodies is an important source of authoritative knowledge in pregnancy and childbirth (Davis-Floyd, 2003; Jordan, 1978). In many countries, the social relationships between doctors, biomedical technology and women patients are fraught with tensions that act as barriers to women seeking care. However this was not the case in Tajik Badakhshan. The lack of cultural barriers to obstetric care highlights the potential for even better maternal care if the clinicians had skill sets to complement their desire for technology. As one traditional birth attendant told me, “I tell my neighbors that they should call me when they deliver, but I send my daughters-in-law to the hospital. Why not? We are not poor.” The social relationships between the doctors, medical technology and patients facilitated a pluralistic perspective on health and disease. This is not to say that women were unaware of problems in the hospital or the potential for poor treatment from akushertka. Despite the symbolism, proximity and availability of the hospital, data from reproductive life-history interviews revealed that only half of women delivered their first child in the hospital, and this number decreases as parity increases (45 percent for the second delivery, 37 percent for the third delivery, 32 percent for the fourth delivery, etc.). Some women commented on the deteriorating care at the hospital since the Soviet era. Older women, in particular, often complained that during Soviet times services were actually free and better, while now, it was expected that “gratuity” would be paid to the staff. However, women made their reproductive health choices with a strong degree of “pragmatism and pluralism” (Obermeyer 2000). When the hospital bought its first ultrasound machine, pregnant women who had not had an antenatal visit previously eagerly lined up in the maternity ward to see pictures of their fetus. Likewise, women regularly presented at the hospital to have IUDs implanted. Anthropologists have written extensively on the social aspects of women’s experiences with new reproductive technologies (Ginsburg and Rapp 1999), including the ways in which they are reinterpreted to fit with pre-existing understandings of reproduction (Bledsoe and Goubaud 1988; Nichter 1989; Obermeyer 2000). On the surface, the main district hospital in Darwaz Tajikistan appears fully equipped to handle obstetric emergencies. However, poorly trained clinicians, outdated medical knowledge and limited essential resources (e.g., electricity) mean that the hospital is largely incapable of providing comprehensive quality obstetric care that could possibly save a woman’s life. If a woman presented with any of the leading causes of maternal death—hemorrhage, obstruction, infection, abortion, or eclampsia—she would inevitably be at the mercy of the unpredictable roads and transportation systems to get her to a hospital in the capital city. Since the district hospital can offer little in terms of treatment for obstetric complications, it is highly unlikely that it contributes to maternal survivorship in Tajikistan.



Why are women in Tajik Badakhshan are not developing life threatening complications that would kill then in the absence of EOC? What accounts for their maternal survivorship when women in Afghan Badakhshan suffer such high maternal risk? In the previous sections I suggested that shared social factors (e.g., malnutrition, seclusion, illiteracy, child marriage) over the course of Afghan women’s lives best explain their maternal risk. In the following section, I posit that Tajik women’s visibility and participation in the public spheres of society incurs protection from the usual onslaughts of poverty and isolation on maternal health. I argue that the Soviet apparatus institutionalized Tajik women’s visibility and has helped to reduce women’s overall risk of developing an obstetric complication and dying in childbirth.

Political and Physical Visibility The mountains of Gorno-Badakhshan formed the most peripheral, tangential, and backwater border of the Soviet Union, and were largely spared the repressive state institutions of the Soviet machine. Instead, the people of Gorno-Badakhshan reaped the social protection of employment, health, and education mandates of Soviet socialism, brought to transform women’s lives in determined and intentional ways. The influence of Soviet rule in the 1920s and 1930s set the women of Tajikistan on a path far removed from that of Muslim women in neighboring countries. In tracing the physical emergence of Tajik women into the public sphere, we begin to see how physical visibility (initially through political mandates) created structures to increase maternal survivorship. Though at times the enforcement of these laws was coercive, met with indigenous resistance, or suppressed local sociocultural and religious practices, they have survived and remain the most robust variable to explain the disparity in maternal mortality between Afghanistan and Tajikistan. Bringing women out of the private sphere of the home and into the public spheres of education, employment, and citizenship (especially under a pronatalist regime) elevated the value of women to the society as a whole, which could then justify increasing social, political, and structural resources to reduce maternal risks (Buckley 1997; Heer & Youssef 1977). This is not to say that the Soviet ideology of gender equality was realized in rural Tajikistan (Falkingham 2000; Harris 2004), but rather, between 1925 and the present day, the women of Tajik Gorno-Badakhshan have covered an enormous distance from private to public spheres, all under the protection of social structures that minimized maternal risk. Gregory Massell (1974) argues that the Soviets colonized Central Asia with communism but no viable proletariat to uplift in the predominantly peasant and strongly Muslim societies. As a result, they focused their attention on women as a “surrogate proletariat” in need of emancipation from backward Islamic oppression. The icon of their oppression was the veil and so, beginning in 1927,



enormous political energy and resources went into large-scale campaigns to unveil the women of Central Asia. Hujum, which means “assault” or “attack,” was the name of the Soviet campaign to bring Central Asian women into the public sphere of education, paid work, and Party membership (Kamp 2006; Massell 1974; Northrop 2004). In making women visible to the state, the campaign created an entirely new space for negotiating gender relations after 1916. At the same time, the Soviets began to collect and aggregate statistical data from households and institutions throughout the USSR. Following the hujum, this had a major impact on the visibility of Central Asian women. Previously the seclusion of women, especially during pregnancy and childbirth, would have presented a significant challenge for any governing body to account for women’s overall morbidity and mortality. Historical evidence on the reduction of maternal mortality in the West demonstrates that aggregate statistical information is vital. Those countries (e.g., Sweden) that succeeded in promptly reducing maternal mortality had long collected data on the extent of the problem that governments could then respond to (Van Lerberghe & De Brouwere 2001). In forcing Tajik girls and women into the public sphere, first with the unveiling campaign and then through the census and vital registration system, the Soviets introduced maternal health into the realm of organized political action. In contrast, in the absence of any kind of vital registration system, visualizing the magnitude of the problem and the political will to combat maternal mortality remains exceptionally difficult in Afghanistan (Van Lerberghe & De Brouwere 2001). When I was in Afghan Badakhshan and asked women about maternal mortality in their community and country, they usually described it as a serious problem, but not in the terms we would expect from someone who has a one-in-three lifetime risk of dying in childbirth (Bartlett, et al., 2005). One woman told me, “You hear of these deaths, but maybe just one in another village. Maybe you hear about one woman who dies in five or six years. But no, I do not think it is dangerous.” This perception was echoed in the comments women would make about their own maternal risk, “I think about it, but not very much. In any case, it is in God’s hands.” The nature of maternal mortality is such that the magnitude of the problem is obscured by the statistical rarity of observing a maternal death (Rosenfeld, 1989). Most women who die do so at home. Even with high ratios of maternal mortality, people in sparsely populated populations, like northern Afghanistan, are very rarely directly confronted with a maternal death. An example of political action generated by the Soviets to address women’s issues involved the abolishment of traditional practices considered “crimes of Islam.” These included outlawing polygamy, wife seclusion (purdah), payment of bride-price (kalym), honor killings, domestic violence, and raising the marriage age to seventeen (Falkingham 2000; Kamp 2006). Although the enforcement of these laws was notoriously weak in the peripheries of the Soviet Union, my data suggest that they had an observed impact on marriage age and maternal



risk. The average age at marriage of my informants in 2007 was nineteen years, while the average ages at marriage of their mothers and grandmothers were 16.5 years and 14.3 years respectively. There is an established relationship between marriage age and maternal mortality (Harrison, 1997; Maine & Rosenfield, 1999; Miller, et al., 2003; Royston & Armstrong, 1989; Wall, 1998), as older marriages usually indicate a delayed onset of pregnancy, fewer pregnancies, access to reproductive services, and higher education. The latter of these, higher education, was also institutionalized during the Soviet era as a gateway to more advanced training and entrance into the economy. At the time, only 1 percent of Central Asian women were literate (Rashid, 1994:66). In response, schools were built in the most remote regions of the USSR, where girls were required to attend classes and older women were also taught to read and write. Like marriage age, literacy has a strong influence on maternal survivorship; even when we control for income per capita, women’s education is the strongest predictor of national maternal mortality levels (Shiffman, 2000). This is because literate women are more likely to recognize a complication during pregnancy or childbirth, use a skilled attendant during delivery, access appropriate health care during an emergency, and avoid delays in referral time. Literate women are more likely to space births, negotiate the use of contraceptives with their husbands, and seek the care of a skilled birth attendant for delivery—all shown to reduce the prevalence of obstetric complications and maternal mortality (C. AbouZah Vlassoff and Kumar 1996 ; Caldwell 1990; Janes and Chuluundorj 2004; Maine & Rosenfield 1999; Shiffman 2000; Thaddeus and Maine 1994; Wall 1998). Of all demographic and social variables included in the comparison between Afghanistan and Tajikistan, the disparity in women’s levels of education was the greatest. Only 2 percent of Tajik women interviewed had no formal education, while the same was true for 70 percent of women just across the river in Afghanistan. If education and marriage laws act as a social umbrella, providing protection to Tajik girls and women from some of the insults of chronic poverty, civil war, social upheaval, and poor nutrition, then we can imagine the vulnerability of women in Afghanistan. On average, women were married by thirteen years (compared to nineteen years in Tajikistan), with some girls married as young as nine years old and yet to reach menarche when they became sexually active. Women were on average fourteen years old when pregnant for the first time, while the average age of menarche is 13.8 years. One woman recalled that she only learned about menstruation after she had her first child: “I didn’t know why it was I was bleeding. I asked my mother-in-law and she told me about menstruation, that it would come every month. I was married when I was just ten so I didn’t know. I never saw this before I became pregnant.” Marriage practices and chronic subjugation of girls and women in parts of Afghanistan are extreme. But Harris (2004: 65), in her ethnography of gender relations in Southern Tajikistan, claims that “polygyny, child marriage, forced



marriage, kalym, and the practice of seclusion continued covertly [during the USSR] and, in the decade since independence, increasingly covertly.” My own observations in Tajikistan support this statement. I knew of a handful of polygynous marriages and women who practiced purdah. My data suggest that marriage age is also falling, as the average age that informants’ daughters were married was eighteen years. As noted earlier, household labor shortages, created by men’s labor migration to Russia, have led to girls being removed from school and married off early. However, in each case I observed, neither the degree nor the extent of their impact on women’s health can compare to Afghanistan. While the economic crisis may be reducing marriage age in Tajikistan, marriage age in Afghanistan may be rising dramatically. During the course of this study the AKF had finished construction of the first primary school in the entire Darwaz district of Afghanistan. In all likelihood, this school will increase the overall age of marriage of girls, further supporting maternal survivorship. When I asked women and men, including the village mullahs, about sending their daughters to school, nearly all were receptive to the idea. When asked how this might affect the age at which their daughters marry, one man responded by saying, “Listen, before there was no school for girls. And so when a girl was old enough to work, she was married. What else would she do? But now that there is a school, why should we not let the girl go to school? After she finishes the school, then she can still be married.” His response illuminates the very simple relationship between opportunity and social change. These opportunities breed social practices (e.g., delaying the onset of marriage) whereby girls and women increase their maternal survivorship over the courses of their reproductive lives.

Conclusion The stark disparity between MMR in rich and poor countries is strong evidence for a relationship between socioeconomic development and maternal survivorship. Therefore, policy recommendations stressing access to quality EOC fall alongside a causal model for maternal death that prioritizes the birth event. What is missing, however, is a more nuanced understanding of the mechanisms by which social and economic inequalities manifest in risk for obstetric complications over the course of women’s lives. Although a focus on EOC acknowledges the “arenas of constraint” keeping women from lifesaving care, it wrongly implies that the causes of maternal mortality are episodic to the birth event (Inhorn 2006a). In the case of maternal mortality, the effectiveness of emergency obstetric care as a treatment for complications that emerge during or after labor and delivery overshadows the effectiveness of less obvious and less costly interventions that act as barriers against maternal morbidity and mortality by increasing a woman’s visibility over the course of her reproductive lifetime. Although structural violence puts women at greater risk through a number



of mechanisms, in distinguishing those that are episodic and those that are chronic, we gain greater insight into the actual causes of maternal mortality. In Tajikistan, specific social practices that increase women’s visibility may assist in preventing obstetric complications, despite the country’s overall impoverishment, isolation, violent history, and sociopolitical turmoil. The most obvious interventions are those that were designed and cheaply implemented to support the Soviet socialist agenda: education opportunities for women, local nurse-midwifery training for the “protection of motherhood,” political will and accountability to women as citizens whose lives deserve protection. We can isolate the influence of these interventions on maternal health outcomes against that of nonexistent emergency obstetric care. Taking this perspective, however, requires a causal model of maternal mortality that recognizes the risks posed by chronic physical and social subjugation over the course of a woman’s reproductive life. At the root of the extremely high MMR in Afghanistan is a complex of poverty-related onslaughts to women’s health, reinforced by harmful practices (Liese 2009). Whereas in Tajikistan social practices create an umbrella of protection, in Afghanistan they increase women’s vulnerability over the courses of their reproductive lives. Malnutrition, poverty, illiteracy, and poor health care are well represented in countries with high maternal mortality. What makes the maternal mortality situation in Afghan Badakhshan the worst in the world, literally, is that extreme forms of geographic isolation, physical subjugation, and social seclusion exacerbate women’s dire situations from the time they are small girls. EOC requires significant and sustained development and investment in key infrastructure. I argue that as overall indicators of maternal survivorship, these are misleading. The cases of maternal mortality and maternal survivorship on the Tajik–Afghan border demonstrates that the critical aspect of development that affects maternal mortality is women’s rights and visibility—which can happen without wealth or development. To eradicate maternal mortality, every woman in the world needs access to high quality obstetric care. To make that happen, socially stratified risk must be reduced by ensuring that every girl in poor countries like Tajikistan and Afghanistan are supported and protected by their societies and governments in ways that make them visible and engaged in the public sphere. NOTES

1. Basic EOC includes administration of antibiotics, oxytocics, anticonvulsants, manual removal of the placenta, removal of retained products, and assisted vaginal delivery with forceps or vacuum extractor. Comprehensive EOC includes all basic EOC functions plus cesarean section and blood transfusion (WHO 2009). 2. The MMR measures the risk associated with each pregnancy and is usually represented as the number of maternal deaths per one hundred thousand live births (WHO 2009).



3. The maternal mortality ratio represents the obstetric risk associated with each pregnancy. It is always represented as the number of maternal deaths per 100,000 live births. For the remainder of the dissertation only the first number will be used. A maternal death is the death of a woman while pregnant or within 42 days of the termination of the pregnancy from any cause related to or aggravated by the pregnancy or its management but not accidental or incidental causes (WHO 2007e) 4. Lifetime risk of dying in childbirth considers both the probability of a woman becoming pregnant as well as the probability of dying as a result of that pregnancy, accumulated over the course of a woman’s lifetime (WHO 2007e). 5. The maternal mortality ratio for Tajik Badakhshan was calculated using data I collected with the sisterhood method in 2007. 6. This material is based upon work supported by the National Science Foundation under Grant No. 0718359, the Fulbright Foundation, and the Aga Khan Humanities Project. Special thanks to my incredible family and my courageous partner. For my grandparents: Dottie and Arnie Nachlis. 7. This finding is consistent with other studies exploring vitamin D deficiencies in populations of Muslim women where veiling and purdah is practiced (Alagol et al. 2000; Glerup et al. 2002, 2000; Hatun et al. 2005). 8. The AKDN and the AKF play a prominent role in Badakhshan on both sides of the border. During the Soviet Union, Badakhsanis had very little interaction with the international community of Isma’ili Muslims. However, during the economic crisis of the collapse of the USSR and subsequent Tajik civil war, the AKF began to provide vital humanitarian assistance to the whole region, which was under the threat of massive starvation. AKDN and AKF efforts are heavily concentrated in the Isma’ili populations, but extend to parts of Gorno-Badakhshan, including Darwaz.

8 VVVVVVVVVVV Chronic Illness and the Assemblages of Time in Multisited Encounters S T E V E F E R Z AC C A

Time and timing are significant features of illness and medicine. Traditional

Chinese Medicine (TCM) recognizes the importance of the circadian rhythms of illness. Body organs, the human body itself, and its life systems are treated with therapy that is organized into time periods known as chronotherapy (Samuels 2000). In the fourth century BC in Alexandria, Herophilos the anatomist measured pulse rates with a water clock in order to understand bodily rhythms and rates. Ayurvedic therapy is determined according to the seasons and their cycles. For biomedicine, time and timing are equally important in understanding illness and for therapy. Measurements of biorhythms and metabolic and physiological rates are crucial elements of diagnosis and therapy. While time appears to be a phenomena that exists outside society and culture, in fact, time and timing are temporal modes built by human groups into culturally specific and socially organized “timescapes” (Adam 1990). These

timescapes may emphasize one temporal mode over another. However, timescapes are made up of numerous concepts of time and rhythmic patterns we can refer to as timing that shape human thought, behavior, and experience. In fact, timescapes, and so human experience, are characterized and organized by a plurality of temporalities, or “play of time” (Hoskins 1993). For example, most of us simultaneously manage clock time, calendar time, seasonal time, daytime, nighttime, playtime, time-out, game time, lifetime, moment-to-moment time, downtime, and so forth, on a regular basis. Because timescapes have the capacity of shaping, guiding, and organizing human thought, behavior, and experience, timescapes are inherently political. This is especially true when time becomes a tool for social control. Clocking into work late can lead to discipline by someone who has the socially sanctioned authority and power to evaluate the use of time, in this case, showing up for work “not on time.” It is clear that time and timing are resources that are socially constructed phenomena that reflect the context of social relationships.




Time and timing are social resources that are unequally distributed within a socially stratified group—some members of the group have more control and access to the uses of time and timing than others. Therefore, tensions and conflicts over time arise when time and timing are used in cultural and social processes of regulation and control among members of groups and among groups (see Foucault 1979; Fraser 1978). Human timescapes, then, can be characterized as a “chronopolitics” (Mitchell 2004), a politics of time and timing that I will argue here constitutes the chronicity of human experience. For all human cultures and throughout human history, medicine and illness have been realms of social reality and human experience for which time and timing often become emphasized in critical and urgent ways. Ethnographic and historical examination of these vital events in the human lifetime can provide insight into the prevailing chronopolitics central to particular, culturally specific, and historically anchored timescapes (Frankenberg 1992; Medvei 1993). An understanding of the uses of time and timing in the shaping of medical perception and practice is useful for further understandings of the medical behavior of practitioners and those suffering from illness and disease. The acceptance of time and timing as social facts can lead to agreements that time and timing are important forms of social control and therefore are experienced as instrumental of power in the context of therapy. For the now-dominant medical paradigm of biomedicine, this is hardly the conceptualization of chronicity. The clinical definition of the “chronic” conceives temporality as a “natural” phenomena arising from the apparent chronology of human life ending in mortal time (Greenhouse 1996)—temporality in this case recapitulates ontogeny. Chronicity as it is applied to health highlights its duration. Loeser (1991: 213) defines chronicity in health as “symptoms that persist beyond expected.” In other ways, and as addressed by several authors in this volume, chronicity has been described teleologically as the state of being chronic; unending, repetitive, incessant, protracted, stubborn, persistent, frequent, relentless occurrences of a genus of phenomena are significant features. With specific reference to health care, chronicity generally means that no disease-modifying treatment is available, or at least there exists an inability to control outcomes. For those experiencing chronic illness the probability of recovery to either a previous state of health or some other improved condition brought forth by remedy is unlikely. Type 2 diabetes, and diabetes in general, is recognized as a chronic disease. While diabetes continues to elude any definitive remedy, ongoing therapeutic surveillance and ministering have the potential to palliate symptoms and complications. The chronicity of diabetes requires diligent and even disciplined attention from both the medical clinic and the sufferer. This therapeutic diligence and discipline is organized and measured in various ways, but suffice it to say, time and timing are key elements in the therapeutic management of diabetes. In the following discussion of diabetes and its treatment, chronicity as the politics of time and timing is examined from an ethnographic and multisited



perspective. I have had the opportunity to conduct fieldwork in the United States and Indonesia that in part took place in hospital outpatient clinics treating individuals suffering from diabetes and other chronic degenerative diseases. In the United States, clinical practice aimed at diabetes and self-therapy generally referred to as “self-management” are ordered for the most part by a culturally specific configuration of chronicity that I refer to as vital time. This sense of time, common to medical practice in the applied biosciences, combines event history and mechanically derived time cycles to organize diagnosis and therapy. The vital time is central to the “vital politics” (Rose 2007: 3) of clinical practice that has been thoroughly internalized in the United States and less so in Indonesia. In Indonesia, clinical practice relies on literal translations of Western medical approaches for the treatment of diabetes; however, vital time is of little consequence in relation to illness experience or medical practice. Rather, translations of epidemiological studies that posit diabetes within the time frame of social and cultural progress linked to economic development are relevant, which I refer to here as circumstantial time. In Indonesia diabetes is conceived of as a Western disease (penyakit barat) and a disease of Western lifestyle (penyakit gaya hidup barat). For many Indonesians I learned from and worked with, diabetes is evidence of an always emergent, anxiously awaited, forever-ambiguous modern future that many in former colonial states have been waiting for, planning for, and working toward. This multisited comparative perspective of diabetes treatment reveals that the political consequences of chronicity—that is, the chronopolitics of diabetes—have significant implications for therapeutic interventions and selfmanagement of this health condition. While Huijer (2005: 424) evokes the concept of “time orchestration” to refer to “individual and social activities that constitute or organize the multitude of heterogeneous times into temporal wholes,” I evoke Ong and Collier’s (2005) notion of the “assemblage” in concert with Tsing’s (2005) ideas regarding “productive friction” in order to recognize human agency in the making and experience of timescapes built into coherences experienced in tension and sometimes in conflict rather than as a totalizing score of harmony and melody the orchestra metaphor tends to evoke. This, I believe, is especially relevant for chronic disease.

An American Nightmare In the history of the relationship of applied bioscience and diabetes, the discovery of insulin in 1921, a medical miracle, fashioned diabetes into a chronic degenerative disease, “mysterious in its character, resistant to all medical treatments, which, once it is fastened upon you, seems almost incapable of being shaken off” (Wiley 1921: 30). With insulin treatment, chronicity and diabetes became lifelong partners. Before its use, death from diabetes was close to onset of the disease. The use of exogenous insulin allowed sufferers a therapeutic



response that introduced diabetes as a chronic disease into the lives of sufferers, as long as doctor’s orders were followed: “The diabetic patient . . . should live out the normal span and enjoy life as fully as his fellows, but to do so he must become a physician unto himself under the tutelage of his doctor” (Macleod 1928: 682). The clinic where I conducted research in the United States is an outpatient clinic located in a Veterans Affairs Hospital that treats the complete assortment of endocrine health disorders. Diabetes is one such disorder. The majority of patients at the time were men, generally older men. I have described the social reality of these clinical encounters elsewhere (Ferzacca 2000), and noted the emphasis in therapeutic expectations that sufferers “work” to obtain control of their diabetes. This willingness to work operated symbolically as the mark of a useful, disciplined, and productive self. Such work, indexed by the obtainment of “control,” measured biochemically in blood glucose levels, is rewarded as a practical, rational, mental, and moral achievement. Sufferers are encouraged to develop plans and programs with the clinician, aimed toward attaining realistic and obtainable goals. Scheduling and timing of eating, blood monitoring, and medications are the central organizing principles of self-management. Successful clinical encounters should end with some discussion of a plan of treatment, whether it is decided to continue with a plan already in place, modify a plan, or devise and institute a new plan. In these clinical encounters, and in the homes of sufferers, I observed the central features in therapy of regularity, task-specific duties, and mechanical rhythms, as well as decision management that I associate with the essential features of progressive and successful capitalist enterprises respondent to market forces. The rhetorical similarities led me to conclude that the ideal rational economic personhood of capitalism also inhabits patient treatment programs. In that analysis, I argued that diabetes treatment generates and organizes a feeling for life that is oriented to the time and timing of capitalist productivity and business management. Precise timings of food and drug consumption are advised in order to obtain and maintain normal blood glucose levels. The ability to achieve and maintain this timing and scheduling was the sign of autonomy and independence. The consequences of abstaining from such precision and efficiency, or simply failing to achieve these “goals,” were embodied in the threat of eventful “complications” associated with medications (particularly, hypoglycemia) and the disease itself. This delicate timing for medication organized around a fixed schedule of eating and food choices is measured and notated by clockwork. Patients are advised to eat breakfast, lunch, and dinner at the same time each day, and it is often assumed that pathological eating or disordered, irregular eating (deviating from this fixed schedule) is partially responsible for the onset of their health condition. Normal eating of three meals a day at regular intervals is, from the perspective of medical advice, not only therapeutic but also represents a vital rhythm.



Many of the men I worked with reported, commented, and complained about the difficulty of instituting and maintaining these schedules and routines at a time in their lives when they don’t lead “a patterned way of life”: Well, when I went on vacation to Detroit. I stayed at my wife’s house, she let me stay there. I visited all the kids, but I didn’t take any meds at all and I got real sick. When my trip is over I’m going to try and get close to these diets for diabetics. I get so tired of fighting this business. The thing is you can’t plan everything. I don’t seem to keep the same patterns every day. My other daughter is in town and we’ve been going out to eat and so forth. Diabetes is time consuming. You have to get a routine.

Those I interviewed and observed responded to the normative self of medical advice organized and represented by cultural referents and social values with “idiosyncratic regimes” of medical practice and perception (Ferzacca 2000). These regimes, while the outcome of individual lived experiences of body and self, reproduce the cultural logic and rhetorics of medical advice, albeit often in alternative forms. Such attention or renewed attention toward work, discipline, and usefulness embodied as time discipline. This discipline was often seen as an annoyance that could be the source of anger, anxiety, a sense of challenge, or achievement, or it could lead to depression. The overwhelming majority of men who participated in my research shared these cultural referents and social values that charge work and time, but they also saw themselves at a time of life—retirement—that allowed them to be excused from engaging these referents and values for defining and cultivating selfhood. In fact, the evocations of “vacation time” and “family time” represent the internalization of a chronopolitics of self and person embodied in a structure of experience organized within the historical materialism and associated “temporalization” (Munn 1992) of a capitalist cultural logic. Vital time in medical advice is progressive and orderly unless complications arise. Adherence to medical advice and an organized plan for self-management are key in order to avoid complications, or disordered bio-events. Clinical technique is used to monitor orderly progress as well as disordered regress. Progress and regress are marked within the language of control. Normalized or stabilized blood glucose levels, reduction of body weight, and other biochemical indices deemed to fall within normal ranges index a sufferer who is “in control,” while any of these indices found to be outside normal ranges



and so forth index a sufferer who is “out of control.” Self-management and therapy are also used to monitor mortal progress. Measuring blood sugars, recording blood glucose levels, measuring weight on a daily basis, and monitoring food consumption using various methods are advised and used by sufferers to varying degrees. These self-measurements that are to occur at home are meant to establish therapeutic rhythms that as embodied mnemonic devices acknowledge the presence of chronicity in the everyday lives of sufferers (see Ferzacca 2000). These measurements and the therapy itself enable a mechanical accounting of the progress of the biomedically defined chronic health condition. At the same time, these self-measures of vital time reveal the capacity of an individual to “work” at their health condition, and so cultivate a normal, progressive mortal self. Vital time, similar to the business time of medical advice, is metaphorically generated, and in this case ontogenetically generated; that is, the progress of the development of the individual human organism is the basis for analogy and comparison. For mortal time, death is the end point, a culturally and socially marked unit of time that holds a great deal of significance for clinical encounters and illness experience in the United States. Emphasis on biological aging ending in death as temporal existence or even as a structure of experience in collective representations is not found in all societies, nor has this cultural theme been a historically stable one within societies for which this emphasis exists (Greenhouse 1996). Geertz (1973) argues that the Balinese use of teknonymy in kinship terms operates to obscure the “‘process of biological aging’ as well as historical progression from an ancestral past, focusing instead on descendents and a person’s ‘procreative status’ . . . looking forward to the child” (cited in Munn 1992: 98). Entering into the ontogenetic image of temporality is the conceptualization of the chronic as a kind of ongoing dureé, potentially unending, persistence without remedy, without end. Men I spoke with remarked usually with a sense of resignation that their diabetes represents chronicity occurring within mortal time: It’s definitely a long-term thing. I came to grips with that a long time ago. There have been times I’ve gone without insulin. This creates a problem in my mind. Until I’m hurting, I won’t do anything. If you gotta die with something. But you can’t prolong this thing [living]. I’ll have to die. Well, it’s just probably kill you, affect your other organs. I think I have a tendency toward it for the rest of my life. I have a friend who died run over by a car but had diabetes. Without the pills I’m a goner. [talks about] letting it all go, giving up by eating what I’m not supposed to.



One has to make a conscious decision to unhappily live forever or happily die early. Time. It’s just a matter of time. I’ll get fed up with it. I’m fed up with it now. Go out and hermit somewhere—hide in a mountain [laughs]. A healthier lifestyle—peace of mind.

Scholars interested in chronic illness experience in the United States have noted that sufferers often describe their experience of chronicity as a sense of “suspension” (Murphy 2001) in time, in the sick role, in uncertainty (Becker and Kaufman 1995), in the betwixt and between (Jackson 2005). This experience of suspension, sometimes described as timelessness, other times as an ongoing sense of immediacy, is often reported to be associated with either loss or intensification of medical control, or simultaneously both. While there may be a sense of suspension, liminality, and uncertainty, chronic disease often brings about the necessity to institute sometimes quite intensive modes of control, highly calculated temporalities, and time-related tasks. Robert Murphy (2001: 76) wrote with his sense of irony as he was increasingly debilitated by his chronic health conditions: “The loss of spontaneity invaded my entire assessment of time. It rigidified my short-range perspectives and introduced a calculating quality to my existence that formerly had been pleasantly disordered.” Moreover, chronicity, in spite of its sense of long duration, for some, is a punctuated experience of acute sickness episodes (Estroff 1993; see also Murphy 2001); it becomes event orientated (see also Smith-Morris, this volume). Guyer (2007) refers to it as “specific event-driven temporal frames.” Even those who care for sufferers of chronic disease and illness report this sense of immediacy, as Antelius (2007: 324) documents in the healthcare personnel narratives of persons with severe brain damage attending a day care center. These “senses of time” reflect individual experiences of chronicity, but also the associative experience of social constructions of self and person in the context of social difference and history (Malaby 2001). For example, one of the men I worked with has this to say: I have a lot of faith in the medical profession. Five sisters are nurses and my brother is a doctor. I had a doctor for five years and then he retired. That was nine years ago. But [I had] three heart attacks and a couple of strokes over this period. And another thing, I had hypoglycemia for four or five years, and then this was reversed. I’ve got a file like so [indicating thickness with fingers], and I feel comfortable with this man [his current doctor at the clinic]. After being acquainted with him like this, he lets me know if anything comes up.

During the course of this conversation this man’s elderly mother, who also suffers from diabetes, had an insulin reaction and passed out. She was given something to eat from the takeout container of fried chicken and fries on the table. As she recovered, I was told that she fell earlier in the week while walking,



and changes were made to her insulin dosage for her diabetes. The man complained to me of his arthritis, and related the story that his oldest brother was taken to the hospital recently for an unidentified reason. Both have had joint replacements, and his mother’s medical history includes a mastectomy and the death of her two husbands. As the evening ended, the mother finished a box of fried chicken, several tea bags of sugar from a restaurant, and got out her AccuChek blood glucose monitor to check her “blood sugar.” For many I worked with, learned from, and observed, the individual experience of mortal time, unlike the promises and threats of medical advice, is hardly orderly in the ontogenetic sense toward death. Rather, the individual experience of mortal time, like individual approaches to the management time of therapy, is a kind of punctuated equilibrium that shapes both a sense of suspension and vital immediacy resulting in idiosyncratic therapeutic regimes that embrace the ideals and normative constructs circulating clinical practice and perception. In this way mortal time is actually compressed, hastened, or at least the threat exists of such compression, haunting the clinical encounter and the medical practices of all involved as a specter of the inevitable if advice and procedures are not adhered to in the prescribed manner. This assemblage of mortal and vital time seems to generate a “dissociation” (Mitchell 2004: 55) that some have observed is expressed among North Americans in psychological terms as depression, anomie, demoralization, and learned helplessness (see Lurhmann 2007: 151). Tanya Lurhmann (2007), in her study of homelessness and schizophrenia, described similar dissociations in and with time that she argues result in a sense of “social defeat” experienced in “actual social encounters.” While social defeat represents some of the psychological consequences and experiences often cited as associated with chronic illness, Lurhmann contends that “anomie, demoralization, and helplessness are the subjective consequences of a particular social interaction, consistently repeated and consistently re-experienced when individuals have repeated social interactions in which they subjectively experience failure” (2007: 151). The men I worked with often remarked, “I’ll try to do what they say and I’ll admit I don’t follow everything. I never felt like he (the doctor) was out of line, but he uses a hard line. Well, that’s like if you don’t behave I’m going to spank you. I can do it, but I need somebody to help me. I can only do what I can do.” From a perhaps more negative perspective, another complained: Habits are the hardest thing to quit. They tell you to stop right away and then you come in and they chew your butt out. There is no sensitivity here. You are always out of control to a doctor. People don’t like to be made a fool of, even an alcoholic. You have to learn to take actions for your foolishness. They should sit down with them and give them credit for living sixty years.

As illustrated here, these men never lived up to the ideals and norms required in a chronopolitics of care.



From Mortal Progress to Historical Progress: Indonesia In Indonesia, in the central Javanese city of Yogyakarta, clinical practice relies on literal translations from English medical texts into the national language of Bahasa Indonesia and sometimes into other more localized languages. Chronicity, as duration without remedy related to mortal time, refashioned by bio-event as vital time, appears in the Indonesian clinical narratives and emplotments with frequency. However, it is of little consequence in the order of medical things. Instead, the translations of epidemiological studies that posit diabetes within the historical (often evolutionary) time frame of progress and development dominate clinical practice and the assembled understandings of this health condition. In the American example, chronicity conceived as a “natural” phenomena in mortal time assembles a “play of temporalities” (Hoskins 1993) that has consequences for medical practice and perception. In Indonesia, this conception of chronicity is diminished in favor of a mensuration of development and social progress, known as pembangunan. This feeling of time as the signature of change was the political foundation of the Suharto regime known as the “New Order,” lasting some thirty-odd years that was in its twilight as I began fieldwork in the city of Yogyakarta. In place of the chronicity of vital time, diabetes as a Western disease (penyakit barat) and disease of Western lifestyle (penyakit gaya hidup barat) reveals another kind of seemingly persistent and protracted temporal destiny, in this case, one that extends as an emergent future, a modern future—one that many in this post-colony have been waiting for, planning for, working toward. Compared to the dissociative psychological experiences associated with chronic disease on individual experience in the United States as noted earlier (see Lurhmann 2007), in Indonesia, practitioners and researchers seem to be concerned that diabetes sufferers are the embodiment of “an unassimilated id” (Mitchell 2004: 55). Yet again, this “involves the loss” or dissociation with a “sense of time” (ibid.). In Yogya (short for Yogyakarta), the notion of assimilation is commonly proposed and accepted in the clinical encounters and in the medical practices beyond those I observed in the clinic. In Java, many of those I met suffering from diabetes navigate a wide variety of healthcare provisions, with what appears to an outsider as a lack of affective investment, even a lack of concern toward the efficacy of provisions. Javanese, when sick, can be assured there is a medicine or therapy for their sickness. This medically plural safety net, however, is in place only as long as necessary efforts (berusaha) are enacted toward finding therapies that, with God’s will, afford continuing good health (setiap penyakit ada obatnya, harus berusaha—literally every sickness has a treatment, so it has to be found). In a plurality of medical care from traditional to modern biomedicine (pengobatan tradisional, obat medis respectively), efficacy of one or several medical approaches at any one time are explained in terms of the fit or cocok of a given medical approach to an individual’s particular health condition. That fit may



be limited to a particular time and place, with this or that medicine or practitioner. In another idiom, Javanese diabetes sufferers often say that a particular health condition of a particular individual needs to be matched with its jodoh, its marriage partner. While certainly therapeutic failures were of concern, the most important next step was to move on and try something else. Even in the face of therapeutic efficacy, the common practice is to try other and many medical approaches. The duration of the illness episode itself, associative complications, or early death resulting from protracted illness were not the compelling issues. Rather, the effort made to find oneself located in the context of useful and therefore suitably particular configurations compel health concerns and health seeking.

Another Modern Irony In the past (masa dulu), the character (sifat) of people and their lifestyle (gaya hidup) was different from today (masa kini). A characteristic of people in Java at that time was patience (sabar). There were not as many people, and the land would grow anything people needed. All people had to do was wait and watch the rice, and the fruit trees, and the chickens grow, and then take what was needed; and rice, trees, and chickens would grow again. People were relaxed/ laid-back (malas). Today it’s different [he points to his watch]; people were not always watching the time. Time is different in the village, compared to the lifestyle of the city. Lifestyle is something new in Java. (Pak Anu, Yogyakarta 1992) When I began fieldwork in Yogyakarta, the health of Indonesian modernity was of some concern, as reflected with regularity in statements made by experts and nonexperts in terms of the costs of development, modernization, and becoming modern. Nationally speaking, as was evident in the many mediated messages, there was a kind of moral panic associated with the appearance of diseases of development, often referred to as penyakit gaya hidup barat or diseases of Western lifestyle. Indonesian medical experts echoed and restated the concerns of the international health community in regards to the newly emerging prevalence and increasing incidence of chronic degenerative diseases in the so-called developing world. From the perspectives of experts and expert systems, international and domestic, all of the demographic indicators in Indonesia are in place for takeoff, so to speak, toward a stage of development referred to by the international health community as the health transition. The health transition model highlights the side effects of development efforts. This model identifies various biological indicators of improvement and progress in developing countries like Indonesia. The World Health Organization (WHO) outlines these positive effects of postcolonial development in terms of the investment market: In many countries, including some of the least developed, political and financial investments in primary health care have paid good dividends.



These countries have shown appreciable improvements in infant mortality rates, death among children under five, and life expectancy. (Dhillon and Philip 1994: 4)

The successes of development interventions that have targeted health conditions, and the quality of the human condition in general, are reflected by these changing demographic measures. Improvements in infant mortality and life expectancy and decreases in rates of fertility and maternal mortality represent important demographic domains that are used as key indicators of the efficacy of development interventions. These “good dividends” (Dhillon and Philip 1994: 4) of development are made to appear as if they are dispersed wisely, but most importantly, democratically. Development as a sign of capitalist investment is linked to the democratic ideal of equal access to life, liberty, and the pursuit of healthy happiness in order to avoid any images of despotic, unconscionable accumulations of wealth disparities and exploitation or bureaucratic incompetence. Ironically, these demographic developments and improvements in standards of living encourage the emergence of chronic degenerative diseases sometimes referred to as diseases of “development” or “affluence” (Bennett 1983; Hamman 1983), diseases of “civilization” (Cohen 1989), or as “Western diseases . . . characteristic of modern affluent Western technological communities” (Trowell and Burkitt 1981: xiii). This disease profile is the hallmark of the “epidemiologic transition” (Omran 1971), a model of “health transition” often used to describe the shift from infectious to chronic diseases. This “unintended result” of social transformations, political strategies, public health plans, and improved quality of life in general is inherent to the nature of development (Alavi and Shanin 1982: 7). While the concern among Indonesian experts was with the emergence of this “new” disease profile, the focus of discussion was predominantly on etiology and epidemiology. Western lifestyle is identified by the international health community as a health risk for Western diseases. An interview in the Indonesian national newspaper, KOMPAS, captures this “regime of living” (Collier and Lakoff 2005), and in particular urban lifestyle as etiologically significant: The prevalence of heart and cardiovascular disease in developing countries, in particular Indonesia, is on the rise as a result of westernizing lifestyle and patterns of eating in these countries. Professor Doctor Boedhi Darmojo expressed this idea Tuesday in a press conference concerning Continuing Medical Education in the field of cardiovascular disease that will be given in Semarang on the twenty-second of August (1992). This education is provided by The Semarang Branch of the Cardiology Association in the framework of improving the knowledge of doctors in central Java about heart and cardiovascular disease, that [Doctor Boedhi Darmojo] refers to as Diseases of Wrong Lifestyle [Penyakit Gaya Hidup yang Salah] . . .



Professor Boedhi Darmojo said apparently the rising prevalence of heart and vascular disease is not because of increases in life expectancy, but rather, more so because of a lifestyle that is wrong. Thus, these diseases are often referred to as new communicable diseases. This means that they are not spread by microbes, but by culture, lifestyle, ways of eating, and so forth. “A hamburger and fried chicken culture is one risk factor for heart and vascular disease,” said Professor Boedhi Darmojo. “At least 50 percent of premature deaths are from heart and cardiovascular disease can be prohibited with improvements in lifestyle,” stated Professor Boedhi Darmojo. “If we are not careful and do not learn from the bitter experiences of the developed countries, it’s not only possible, but probable with achieving prosperity [kemakmuran] there could also be side effects we don’t want . . .” This doctor, a heart disease expert, added, “a hamburger and fried chicken fever [demam] in adults is attacking [melanda] children of school age in the large cities of Indonesia.” (KOMPAS 1992)

Epidemiological studies in general claim that individuals in developing countries like Indonesia place themselves at “risk” for chronic degenerative disease by adopting Western or similar modern, urban lifestyles. This lifestyle is measurable by food choices and eating patterns, weight, capitalist forms of accumulation and exchange, but most importantly by sickness. Those individuals who do not become sick with Western diseases are presumed, in contrast, to have maintained “traditional” lifestyles characteristic of the “rural,” agrarian-oriented countryside. The statement that began this section clearly demonstrates these contrasting portraits of life and associated regimes of living. Many I spoke with were aware their health conditions might have something to do with diseases of the rich (orang kaya) or might be the result of recent times of prosperity: If I’m not mistaken, ya, perhaps, now there is already a relationship with [the increasing prevalence of diabetes and hypertension], what, ya, more prosperity (agak makmur). As well, food now is always delicious, like that.

The doctor I worked with in the outpatient internal medicine clinic discusses this issue of affluence and health with some of his patients. D:  It

is said in books, ya, that diabetes is a disease of the rich (penyakit orang

kaya). S:  Oh, D:  A P:  If


disease of the rich. you’re talking about me, ya, I’m a person who eats too much. True or not?

D:  How S:  Ya,

about in America?

this is true [eating too much] in America also.

P:  Many

in America also suffer from diabetes?

S:  Wah,




thought only in Indonesia.

P2:  It’s S:  Ya,



P2:  It’s

[diabetes] not choosy (tidak milih-milih).

P3:  But,

I want to ask a question if in other countries what is it that they eat

a lot? P:  Meat,


P3:  Nutritious, P:  Certainly P3:  That’s

but, well, there is nothing there. What’s the reason?

that is customary [to eat meat and cheese], like that, ya.

right. Probably for foreigners it doesn’t matter. But [surprisingly]

for Indonesians eating that food, cholesterol. Maybe it’s because of the weather [in Indonesia]. Dr. Didik and his patients, while not referring to diabetes as a Western disease or a disease of Western lifestyle (gaya hidup barat), are commenting on the current conditions of abundance (makmur), the result of economic development for individual lives and overall, certainly the result of development and modernization, therefore, a sign of the modern. However, for the patients who remember difficult times of famine and scarcity that mark Indonesian biohistory, especially this older crowd sick with chronic disease who remember the colonial period and the Japanese occupation, these prosperous times of abundance signified by both quality and quantity of food have become an ironic misadventure in the course of Indonesian history. As diabetes sufferers, they reap the consequences. However, what was interesting at the time, and remains so, is the manner in which these cultural assumptions developed in fields of expertise were used in other social fields. For example, in the clinic in which I observed encounters between practitioners and patients diagnosed with one or more “Western” diseases, a common worry expressed by patients was their concern with the impact the illness would have on their social relations. Their attentions were mostly focused on reciprocal exchanges that take place in their lives. Their concerns were with what impact a disease that requires attention to behaviors associated with eating would have on food sharing and ritual feasting. How would it look to those who host ritual feasts when food was refused whether or not health concerns were behind the appearance of refusal? For example, in an exchange between the doctor and a patient these concerns surface: D:  This P:  Yes,

is the green book [guidebook].

I’ve studied it. But, I’d like to resolve the issue of the chapter on diet. I

am not yet able to follow [the advice in the chapter on diet] in regards to cooked rice at weddings (sekul semanten-semanten). D:  Oh,

this, ummm, in the future, because of this issue, use a replacement, for

example, only this much rice (nasi sekian). P:  Yes.



D:  Father

(Pak) if you are bored with rice and want to replace it with potatoes,

ya, you can replace it with potatoes, but rice that is thrown out . . . P:  Yes. D:  Also,

Pak, for example, if you want to replace it [rice] with corn, just so

much corn. P:  But,

sorry, if I did that, you would see it (pirso), at an esteemed and honored

event speech, religious, spiritual (pundi-pundi) . . . D:  Oh, P:  At


these events, ummm, there are refreshments (segah). There is nothing

you can do but eat. Then, I don’t want a finger pointed at me . . . [tape is unclear] temptations. D:  Oh,


P:  Then, D:  Ya,

at the speech at a wedding. The mother can see me [not eat the rice].

well . . .

P:  This

is very difficult, because it is in plain sight (nyetop meniko).

D:  The


In this dialogue the patient reminds the doctor that refusing rice at a wedding would be a considerable social faux pas—an extremely visible one that is outside the social graces of the sociality of ritual feasts. For a moment, the doctor suggests that the elderly man replace the rice with potatoes and corn, food culturally marked as appropriate only for the poor, never served at a wedding feast or other ritual feast. But more important here is the request to forgo full participation in ritual feasting and so ritual exchange—to take advantage of the circumstances of the time. Western lifestyle, or gaya hidup barat, is one that involves the accumulation of money, capitalist consumption of restaurant food, a lack of patience, and a reliance on the measuring of time in contrast to the accumulation of social relations, noncapitalist consumption of cultivated food, and a temporality of patience and preparedness for opportunities that arise coincidentally. The former produces fevers, Western diseases, and emotional disturbances, and closes the door on luck, livelihood, and prosperity. The latter maintains the smooth flow of health, things, and people, and opens the door to the possibilities of luck, livelihood, and prosperity. In contrast to the vital time that is assembled in the clinic in North America where I conducted fieldwork, coincidental, circumstantial time is central for clinical encounters I observed in Indonesia. This temporality is central because it is a key organizing principle in a culturally specific structure of experience that I have understood as continual apertures to a dynamic entanglement of persistent limits and emerging possibilities (Ferzacca 2001). For example, the doctor listens to a fifty-five-year-old male courthouse employee who had been working on a construction project in Bogor, a Jakarta suburb. The doctor, in spite of his reliance on translated medical advice and opinion organized by vital



time, conspires with his patient in creating a narrative of diabetes treatment that affects a temporality of another kind: S:  Do P:  At

you usually eat at home or go out to eat? the resident barracks (asrama).

S:  The P:  Ya,


at the place where they are remodeling the canteen.

D:  What

this is, recently he went to Bogor [West Java] for this construction for

as long as . . . P:  Two


D:  Two

months. Now, perhaps while he was working there his eating wasn’t

under control (makannya khan agak nggak terkontrol). P:  The

place was cold (dingin), Doc. So . . .

D:  Right,

the place was cold. In Bogor it’s very cold and the context of the situ-

ation for eating times was not, perhaps that situation wasn’t in accord (sesuai) with your usual schedule. P:  Ya,

more was added to my usual schedule.

D:  Did P:  Ya,

you drink coffee there or not?

there I did, Doc. It [coffee] comes from there, Doc. Actually I’ve never

drank coffee but I was forced to (terpaksa), ya. It’s very cold. D:  Forced

to drink coffee to endure the cold.

S:  Ya,

I haven’t visited Bogor yet.

P:  It’s

very cold.

D:  Have

you already had your consultation with the nutritionist, sir?

P:  Already. D:  Before P:  Ya,

I gave you an instruction book, ya?

you already did.

D:  Are P:  No,

there any questions about something you may not yet know about? only some questions about this diet (diit), Doc. Actually I have not yet, if

I lessen sugar a little, weakness (lemes), Doc. How do I overcome that? D:  So

if you don’t drink sugar . . .

P:  Ya,

I feel weak (lemes rasanya).

In this case, the doctor accepts the patient’s “folk” concepts of health that situate geography, climate, work rhythms, food choices, and eating patterns with an ethnophysiology that explains loss of energy and feelings of weakness. The man responds to the doctor’s assertion that his eating patterns were “rather not controlled” (makannya khan agak nggak terkontrol) with a comment about “the place,” Bogor, being “cold” (dingin). The doctor, upon hearing this, looked my way with a glance that marked this comment as folklorish—an instantiation of hot–cold theories of health and therapy. The doctor was already well tuned toward these folk concepts. I had probed these issues with many other patients in the clinic in front of him often to no avail, or at least, I was unable to record



firm hot and cold theories of health and therapy in the classic sense directly related to adult-onset diabetes or other Western diseases. Nevertheless, the doctor thought this was something I wanted to hear, ergo, the look my way. The outward order of the patient’s behavioral life was opened to disorderly influences in this other environment (lingkungan) in the asrama, a temporary residence for migrant workers. As well he was forced to eat at restaurants rather than home cooking, therefore, his eating patterns were “rather out of control.” In fact, as the patient himself stated, he was forced (terpaksa) to drink coffee. All of this had impacted his usual schedule (jadwal biasa), which had been added to (melebihi). Perhaps this coffee talk seems trivial, but underneath lies a subtext founded upon a structure of experience that emphasizes circumstances and coincidence. A semantic network of sorts is constructed in this clinical encounter in which coldness, being away from home and family in a land of strangers, and bitter coffee reverberate with feeling weak and tired (lemes). The courthouse employee attributes this to a decrease in sugar consumption (kurang gula). The unspoken cultural logic organizing the patient’s commentary is his capability to negotiate and maintain his local identity as a man from central Java (Jawa Tengah), particularly a man from Yogyakarta where the food and drink (and life) are sweet. Thus, the doctor and the courthouse employee traverse a common cultural landscape. The vital time of chronicity, with its attention to ontogenetic progress and the endgame of death, is underplayed, or at least in comparison to the need to fit within a new set of social circumstances brought about by historical rather than mortal progress. The clinic, open and receptive constellations of multiple cultural, social, and historical forces, and “congeries of productive friction” (Tsing 2005) assemble a play of temporalities that have a familiar, and particularly modern, flavor. From the epidemiologic perspective, significations of insalubrious modernity and healthy tradition are measurable and coded in terms of human biology. Changes in body weight, life expectancy, food consumption patterns, levels of energy expenditure—important biological factors for the development of “Western diseases”—index changing social and cultural forces. Vital time becomes history, and a problematic one at that. Simultaneously desired and feared, oncoming modernity as pembangunan, or development, represents not only a health transition, but a transition in identity. Biological pathologies represent social and cultural pathologies related to change, and particularly related to the ambiguous shift from the traditional to the modern.

Conclusion [T]he growth of social consciousness, like the growth of a poet’s mind, can never, in the last analysis, be planned. (Thompson 1967: 97)

Any comparison should probably move beyond consideration of several select components or elements involved in social interaction. Up to this point, my



comparative gaze has focused on the play of temporalities and feelings of time. Vital time in the American encounters and circumstantial, coincidental time in the Indonesian encounters are certainly culturally specific kinds of history that are each reflected in numerous other cultural venues and modes of social interaction in their own locales. Vital time and circumstantial time also index significantly different structures of experience. In the Indonesian case, and particularly for many Javanese I worked with and learned from, circumstantial time of clinical encounters makes sense as a feeling of time organized semiotically and experientially around the rhizomatic quality of experience as they understand it; as pangalaman, which I have found emphasizes contiguous relations as continual apertures to a dynamic entanglement of persistent limits and emerging possibilities as a crucial feature to a structure of experience. Comparatively speaking, the temporal–causal sequencing of vital time emphasizes ontogeny, and self-management becomes a kind of chronicle of vital events leading from one stage of human development to another, to another, and so on. However, several other elements of these clinical encounters should be cited here. In the Indonesian case, applied bioscience remains an alternative among many for health care, while it predominates in the American healthcare system. Applied bioscience is not authentic to Indonesians or the Javanese, while it is a homespun medical approach for Americans. The availability of panoptic devices for monitoring vital events is remarkably different. It could be argued that the introduction and increased availability of these self-management techniques will certainly have an effect of “cultivations of self” (Foucault 1986) and the emergence of new forms of “biosociality” (Rabinow 1996) and “therapeutic citizenship” (Nguyen 2005). Research in various contemporary biopolitical realms of experience and social interaction does not necessarily indicate this kind of cultural imperialism. In the Indonesian clinical encounters vital signs are at the very center of clinical narratives, but the “effect” has not been, at least in the encounters I have observed, entirely transformational for feelings of time. Clinical practice and its extensions beyond, in both the United States and Indonesia, can be examined as an assemblage from which attempts are made to “bring all associative pathways under centralized semiotic control” (Mitchell 2004: 55). In the American case, individual medical responses that I characterize as idiosyncratic medical regimes illustrate the manner in which timings are manipulated to meet individual bodily experience. Interestingly, many people with whom I worked cite the social as disruptive sources in their selfmanagement endeavors to treat their diabetes. Indonesian sufferers, however, cite the need to treat their authentic identities, in this case as Javanese, and seek medical perception and practice they refer to as masih Jawa asli, or still authentically Javanese. This presents a recognizable set of potential circumstances and coincidences from which they can draw upon as resources and as



a structure of experience that potentially can nurture the Javanese self. As the late Gay Becker (1998) suggested, “there is a temporal dimension to illness that affects peoples’ responses to their bodily changes.” In one case, the “the threat of death becomes chronic” (1998: 47); in the other, the potency at hand to make use of history is a chronic problem.

9 VVVVVVVVVVV Chronicity and AIDS in Three South African Communities C A R L K E N DA L L A N D Z E L E E H I L L

In their history of HIV, Elizabeth Fee and Daniel Fox describe the international AIDS meeting in Montreal, Quebec, in 1989, and how Samuel Broder, then head of the National Cancer Institute, declared that AIDS was a “chronic disease and cancer the appropriate model of therapy” (Fee and Fox 1992). The speech was an intentional effort to normalize AIDS and to demonstrate the potential cascade of benefits from treatment. With treatment, the implication was that stigma, resistance to testing and disclosure, and resistance to open discussion of HIV would be greatly reduced. At the time of the statement, the term highly active antiretroviral therapy (HAART) had not been coined, although combination therapies, cocktails of different drugs each with specific antiviral properties, were being used. HAART itself, defined as a selection from three (now four) kinds of drugs with specific antiviral properties, was not developed until 1996. This naming and acronym was part of the transition of AIDS from fatal disease to medically managed condition. In many developed countries, the availability of HAART in 1996 reduced fatalities by 50 to 80 percent and transformed HIV/AIDS from an acute viral infection with an almost universally fatal outcome into a chronic infectious disease. As a result of this transition, the therapy appeared to bring along concomitant changes in public opinion and in attitudes among those who were infected (Montaner et al. 1998; Mocroft et al. 1998; Palella et al. 1998; Deeks et al. 1997; Danzinger 1996; Siegel and Lekas 2002). The use of the term chronic infectious disease was predominantly a biomedical one, capturing neither the social problematic of chronic (Becker 1998) nor the lived experience of the illness. Like the illnesses experienced by those with diabetes, heart disease, or mental illness, the experience of HIV/AIDS is very different from clinical and laboratory descriptions. HIV/AIDS continues to be experienced by many, through intermittent acute episodes of symptoms of disease, with underlying worry about disease progression and worry about the perpetuity




and life-threatening nature of the illness, rather than a relatively low-level, longlived condition “under control.” Chronic diseases create uncertainties about progression, causes, and effects, and have many different implications for the sufferer. This includes a moral component, the stigma and contagion associated with the identification as a sufferer of a chronic illness, especially AIDS. It is this underlying embodiment of the condition through its symptomatic ups and downs that is truly chronic. Although some epidemiologists and biomedical researchers have questioned the bifurcate classification of disease to distinguish acute and chronic, the distinctions took on a life of their own in Euro-American folk epidemiology some decades ago with overzealous declarations of an end to infectious disease. Acute diseases were associated with infection, and chronic diseases with lifestyle. Perhaps this was a case of biomedicine imitating popular thought, but it also was an unrealistic confidence in the power of specific interventions— primarily vaccinations and treatments—to eradicate major infections. But many curable acute diseases, such as tuberculosis or leprosy, become chronic in the absence of effective interventions, their continued endemicity beginning to populate an enormous gray area between chronic and acute. With the advent of treatment, HIV/AIDS has fallen also into this gray area where limited coverage and long-term consequences of therapy undermine confidence in biomedical solutions. Yet whatever the contested scientific basis of distinctions among diseases, acute and chronic are used descriptively on a regular basis and AIDS is classified as a chronic communicable disease. This is from an early account of the psychosocial impact of AIDS: Chronic illnesses are typically incurable, and thus the goals of medical care are usually containment, slowing disease progression and symptom management rather than cure . . . Frequently, they have an uncertain course or disease trajectory often characterized by alternating periods of remission and recurrence, or stable periods interrupted by episodic exacerbations of symptoms. Most require adherence to a treatment regimen . . . Chronic disease also typically requires considerable self-care on the patient’s part, since most of the day-to-day management of the illness takes place outside formal health institutions or facilities . . . Roles and responsibilities in relationships and families typically must be re-negotiated in light of the patient’s limitations or disabilities. Finally, chronic diseases often bring about identity changes as the patient attempts to integrate the illness into his/her life and self perception over the long haul. Today, AIDS meets the criteria for a chronic illness. (Siegel and Lekas 2002: 263)

Because of the complex psychosocial factors that influence how people live with and perceive their illness, the transformative and liberating effect of the transitioning cascade of HIV/AIDS from acute to chronic, as argued by Broder, is



not so clear. As Siegel and Lekas (2002) suggest, although there was some alleviation of depression and other emotional issues in patients on HAART, being in treatment did not alleviate depression in a statistically significant sense. There are other varied and significant side effects associated with HAART. These include often permanent changes in body fat distribution, sexual dysfunction, and liver toxicity. Recent accounts (Gross 2008; Burgoyne and Tan 2008; Liu et al. 2006; Siegel and Schrimshaw 2005) also document the growing prevalence of physical illness associated with long-term HIV treatment. The effect is not just reported in the United States; the same transformative expectations and varied effects are found, for example, in the United Kingdom (Berridge 1996) and might be expected elsewhere. The transition described by Siegel and others has taken place primarily in developed country contexts (for Siegel in New York), in an environment open to discussion of HIV/AIDS, with activists and support groups addressing each step of the transition, and where there is strong political commitment and community support to treat all who request antiretroviral therapy, no matter the cost. How different it is to discuss or anticipate the acute to chronic transition of HIV/ AIDS in an environment where resources are inadequate and when the disease is shrouded in shame and denial. The process of transformation from acute to chronic in developed countries, as proclaimed by Broder, was tied to the success of antiretrovirals (ARVs); a concomitant change was expected in developing countries when ARVs were introduced. This was the early logic of the massive U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), at its time the largest international health initiative ever funded (Institute of Medicine 2007). But how can the biomedical transition to chronic occur when ARVs cannot be provided to all who need them? The lack of coverage for ARVs makes a mockery of HIV/ AIDS as a chronic condition. For the millions of HIV-positive individuals without access to ARVs, HIV/AIDS is still an acute illness with relatively rapid onset and fatal outcome. In such resource-poor settings, local ethnomedical models of HIV/AIDS are already complicated by the long lag period from infection to frank disease. Stigma has lead to opportunistic infections such as TB being attributed to sexual causes rather than to immune suppression associated with HIV. ARVs in such settings enter a complex arena to compete with traditional treatments, and treatment is challenged as failing to address the root causes of HIV/AIDS (Chopra et al. 2006). Popular etiologies of HIV/AIDS in sub-Saharan Africa have focused on moral and other ultimate causes of disease with denial and deniability, associated with refusal to be tested, often obscuring the role of HIV in deaths. With this euphemizing discourse surrounding causes of mortality, not only are the potentially liberating effects of chronicity also masked, but self-care and adherence to treatment are made problematic as well. In this chapter, we focus on HIV in South Africa. We explore whether the increased availability of ARVs has changed the perception of HIV among members of the general community with uncertain HIV serostatus, a population of



positive women in a surveillance cohort, and a population of men and women on ARVs. We argue that although there is epidemiologically significant evidence of the transformation of HIV to a chronic disease among those on therapy, of longer life with HIV, this new chronicity—reflecting a social reality—has created a tiered system of haves and have-nots. In addition, HIV is still charged with stigma, discrimination, and fears of contagion that will shape the experience of the sufferer for the foreseeable future.

The Setting South Africa accounts for nearly 10 percent of the global burden of HIV infection. It is estimated that out of a total population of forty-two million people, there are currently 5.5 million (13.1 percent) South Africans infected with the virus (UNAIDS 2007). Because there have been only a few community-based HIV prevalence or incidence studies in the country, national figures rely on sentinel surveillance of women attending antenatal clinics. Due to selection bias related to the age of sexual debut and contraceptive use (Rice et al. 2007), antenatal data tend to exaggerate the seroprevalence; however, they demonstrate the trend and variation across the country. In 1990, national HIV seroprevalence among firsttime antenatal clinic attendees was 0.76 percent. By 1995 it had reached 10.5 percent; by 2000 it was 24.5 percent; and by 2005 it was 30.2 percent. There is large variability within South Africa’s nine provinces, but even from the collection of the earliest data, KwaZulu-Natal, the most populous province, has consistently experienced the highest HIV prevalence (Bradshaw et al. 2004). Recently, several nationally representative population-based surveys have confirmed the continued high HIV prevalence and incidence and its geographical variability. In 2003, in a nationally representative household survey among fifteen- to twenty-four-year-olds, HIV prevalence among young women was 15.5 percent, rising from 4.6 percent among fifteen- to sixteen-year-olds to 31 percent among women aged twenty-one to twenty-two. Among men aged fifteen to twenty-four, HIV prevalence was 4.8 percent (Pettifor et al. 2005). Similar results were recorded in two nationally representative surveys of adults (Shisana and Simbayi 2002; Shisana et al. 2005), in which HIV prevalence among fifteen- to forty-nine-year-olds was 16.2 percent nationally. Whatever the data source, South Africa is experiencing one of the most severe HIV epidemics in the world, with no indication that the number of new infections has reached a plateau. In South Africa, the distinctive social discourse about HIV is deeply rooted in history and the social fractures of South African society (Fassin 2007). Racist attributions and xenophobia lie at the core of the fundamental denial of HIV/ AIDS as foreign and nonlocal. As alien, both the disease and ARVs are imposed from the outside. Local diseases, such as wasting, can be dealt with; local cures, such as beetroot, can be appropriate. However, this new disease has its source outside the community; neither it nor its treatment can be “normalized.”



Normalizing it somehow means loss of local control, and, therefore, the popular ideology of the disenfranchised stands opposed to the necessary process of making the disease proximate and socially relevant (Macintyre and Kendall 2008). Understanding chronicity as a social construct goes a long way to understanding how to overcome stigma, discrimination, resistance to testing, and other consequences of arguably the worst AIDS epidemic in the world. As we will illustrate, chronicity is not a consequence of treatment and reclassification, but a goal to be sought, one deeply dependent on understanding time and history in South Africa. In 2003, the South African Government agreed to make ARVs more widely available. Antiretroviral therapy was already being provided by some provinces and some private suppliers, but no national commitment existed. The National Department of Health’s (DOH) 2003 Operational Plan laid out ambitious goals for treatment, aiming for four hundred thousand people to be on HAART by 2006 and one million people by 2008. International agencies have committed over $400 million for this effort in South Africa, in addition to the resources directed to other high-prevalence countries in the region. As a result of this commitment, coverage in South Africa increased at an unprecedented rate, from practically zero in 2002 to some 329,000 in September 2007 (PEPFAR 2008). Treatment coverage has, however, consistently fallen behind national goals: By January 2006, only about half of the people projected to be on treatment were actually receiving HAART. This is still the largest number of patients on HAART in sub-Saharan Africa. At the time of our study in May 2005, forty-two thousand people were on HAART (Day and Gray 2005). Although we cannot provide an exact estimate of the total number of people requiring antiretroviral therapy, even this large number leaves many people who require therapy untreated. As a matter of policy in South Africa, treatment for those who meet eligibility criteria is free at accredited public health facilities. To be eligible for HAART, a person must have a blood CD4 cell count of less than 200 cells/mm3 or be in clinical stage IV of the disease, frank AIDS (WHO 2006) Psychosocial factors are also taken into consideration. These include demonstrated individual reliability, no active alcohol or other substance abuse, no untreated depression, disclosure to at least one person (who is willing to act as a treatment supporter), and ability to attend the ARV clinic on a regular basis. These selection criteria favor those who are “good citizens” and the no-depression requirement implies that depression would be an abnormal reaction to being infected. New patients undergo a treatment readiness program (National Department of Health 2003). The exact content of the program differs by clinic but it frequently covers issues such as positive living, nutrition, how HAART works, side effects, adherence, and the role of the treatment supported. During this program, patient’s adherence to appointments and to non-HAART medication is often observed. This treatment readiness program was borne out of concerns about adherence and



drug resistance but in many ways it also serves to prepare patients for the selfcare element that is part of living with any chronic condition. However, there is a great deal of variation across clinic and treatment sites, reflecting the decentralized federal system of South Africa and the large number of clinics run by nongovernmental organizations. Criteria for inclusion and exclusion from treatment are often clinic specific, depending on local policy at the province, area, city, or clinic level. These policies often have to be adapted in response to stockouts, staff shortages, and other issues.

The Study The research on which this chapter is based was conducted by the authors in collaboration with colleagues from the School of Public Health, University of the Western Cape, the Health Systems Trust, and the Department of Anthropology, University of Johannesburg. Data were collected between April and June 2005 in three South Africa provinces where HAART had been provided to participants for at least six months. The sites were purposively selected to reflect different socioeconomic profiles, rural and urban locations, and HIV seroprevalence rates (Doherty et al. 2003). We summarize these in the following (see Table 9.1). In Western Cape, the study site was a peri-urban/rural commercial farming area with a high level of relative wealth, but also high levels of socioeconomic

TA BLE 9.1

Description of study sites Antenatal


Number on


provision of

ART at time

of HIV a

ART started

of study






February 2002


Eastern Cape



October 2004


Government clinic in provincial hospital operating 5 days/week

Western Cape

Mixed periurban/rural


February 2004


Government clinic in outpatient hospital operating 2 days/week


et al. 2003

Program description Large NGO clinic operating 5 days/week



inequalities reflected in pockets of poverty and poor health. The population is ethnically mixed with Afrikaans and Xhosa cultures dominating. Many poor people are seasonally employed farm workers and levels of unemployment are high. The HIV prevalence rate among antenatal clients in 2003 was 15 percent. The HAART clinic uses space in an outpatients’ hospital two days a week, on the other days the hospital provides its usual outpatient activities. The clinic serves the large town and the rural area. ARVs were introduced in the first half of 2004. As the clinic space is shared, the clinic can only open two days a week. The health system was well resourced; transport links from other peri-urban areas to the clinic were good. People living with HIV/AIDS also benefited from the services of a large number of NGOs. The study site in Eastern Cape was one of the poorest rural areas of South Africa. The district has a poor infrastructure, a poorly resourced heath system, and very high levels of unemployment. The population is predominantly Xhosa and is centered around a small town that lies along the main road, but much of the population live in rural hamlets many kilometers from the town. Many people rely on government grants for survival or on remittances from family members working in the largest city in the province, Port Elizabeth, or from larger cities such as Durban. The HIV prevalence rate among antenatal clients in 2003 was 28 percent. HAART was introduced in the second half of 2004, and is distributed through the HAART clinic, housed in a small unmarked building by the district hospital gates. The clinic is open five days a week but only dispenses HAART on Wednesdays and only takes blood for CD4 counts on Mondays. The final study site was in a peri-urban settlement close to Durban in KwaZulu-Natal province. It consists of a mixture of formal and informal housing that often lacks basic sanitation. The population is predominantly Zulu. The HIV prevalence rate among antenatal clients was 41 percent. The HAART clinic is a stand-alone clinic run by an NGO and is situated in a busy commercial area; ARVs were introduced in the first half of 2004. The clinic is open five days a week. The health system is moderately resourced compared to the other sites. We used a Rapid Anthropological Assessment (RAA) methodology (Hill et al. 2003; Kendall et al. 2005; Annett and Rifkin 1995) to explore the impact of the introduction of ARVs using a quick, cost-effective, and timely data collection method. A total of 197 interviews were conducted in three populations: Seventysix people on ARVs, fifty-eight HIV-positive women diagnosed when pregnant and not on ARVs, and forty-five members of the general community. An additional eighteen interviews were conducted with ARV clinic health workers and prominent community members/leaders such as local politicians, church leaders, and traditional healers. Sample size was determined using saturation sampling techniques, i.e., respondents were interviewed until no new information was learned. A different sampling strategy was used in each group (see Table 9.2).



Sampling approach Respondent




Sampling strategy

Content of interview

Health workers


Purposive sampling: Head of ARV clinic and other relevant health workers (e.g. HIV/AIDS coordinator) interviewed at each site.

Background information about HIV treatment

Community leaders


Purposive sampling: Key community leaders identified from fieldworker and researchers detailed knowledge of study site.

Knowledge and perceptions of HIV and ART and the impact on people’s lives

Community members

45 (20 men, 25 women)

Purposively selected and approached in their home or workplace to maximize geographic and occupational variation and to balance gender and age.

Knowledge and perceptions of HIV and ART and the impact on people’s lives

HIV positive women

58 women

Randomly selected from ongoing cohort study. Women who had participated in any other qualitative studies in the past 6 months were excluded.

Case histories

Persons on treatment

76 (34 men, 42 women)

Purposively selected from each site’s key ARV clinic to balance gender and age. Those taking ARVs for less than 2 months were excluded.

Case histories

The ARV respondents were selected by fieldworkers at the main ARV clinic serving each study area; similar numbers of male and female patients were selected. As we wanted to compare the experiences of those established on therapy to those not on therapy, we excluded those who had been on therapy for less than two months as we felt they would still be adjusting to their regimen. The HIV-positive women not on ARV were randomly selected from an ongoing cohort study of women enrolled and followed after participating in the government’s Preventing Maternal to Child Transmission (PMTCT) program. Women who had been in previous qualitative research were excluded so as not to overburden respondents. Community respondents were selected by fieldworkers in their home or workplace to maximize geographic and occupational variation and to get a balance of gender and age. The response rate was 100 percent in all groups except the community member group, six of whom did



not wish to be interviewed due to time constraints. All participants—except the health workers—received a cash equivalent of US$10 for participating in any part of the interview. Interviews were conducted in local languages by six trained interviewers and lasted from forty-five minutes to three hours. One of the authors (ZH) was present in each site. Each interviewer conducted one interview a day in a location selected by the respondent (generally their own homes, the project office, or the ARV clinic) and written consent was obtained. Interviewers took field notes during the interviews, which they converted to a detailed transcript immediately after each interview. The transcripts were reviewed daily by site supervisors to identify emerging themes and ensure quality. Interviews were analyzed through systematic identification and coding of themes, and the findings were discussed and consensus reached in two analysis workshops attended by both authors. The text presented in the results section comes from the fieldworker transcripts where they documented each respondent’s interview in as much detail as possible. We quote from our interviewer transcripts. These are sometimes direct statements from respondents translated into English, but they are often paraphrases from these interviews provided by our fieldworkers.

The Community How HIV/AIDS is perceived by the community has implications for HIV/AIDSrelated prevention behaviors, such as condom use and testing (Kalichman and Simbayi 2004), as well as for chronicity. The social context of HIV/AIDS—acute or chronic—in South Africa is characterized by perceptions and evidence of stigma and attributions of blame. Petros and colleagues (2006: 67) describe this blame as being “refracted through the multiple prisms of race, culture, homophobia and xenophobia” that are South Africa’s inheritance and social landscape, notwithstanding the liberalism of the constitution of the “new” South Africa. Within the South African context, gender roles are one of the key cultural issues in shaping perceptions of blame. Although gender issues are readily identified by communities, studies that observe gender roles within families suggest that the stereotypes are not often borne out (Montgomery et al. 2006). Our interviews with community members also identified the theme of blame, with respondents blaming specific groups and using charged terminology like “dishonest, uncontrollable, reckless” to describe their behavior. This blaming may reflect the communities’ need to understand the epidemic, “Sisi who brought this disease here in South Africa . . . you must know the person who did this,” perhaps so they can put some boundaries around the chaos and threat that HIV/AIDS has bought to their communities. The groups that were blamed included migrants, foreign governments, people in certain occupations, certain age-groups, and men. Men were blamed for forcing women to have multiple partners: “Most men are trouble . . . this becomes difficult for the women to bear and they end



up looking for other men” (thirty-five-year-old male) or for putting women at risk: “Females are victims of males . . . who get involved with three females at the same” (twenty-five-year-old male). Respondents framed these gender roles within the context of migration, alcohol use, and unemployment: “These people (who spread AIDS) do not work, too many live in one room . . . these male young adults have schoolgirls as their girlfriends . . . get drunk and have sex anytime” (thirty-five-year-old male). Community members were quick to blame “others” for spreading the disease and also described “others” in the community as gossiping about the previous sexual behavior of a person known to be HIV-positive. However, community respondents rarely reported that an individual with HIV deserved or should be blamed for their status. Community members described this lack of individual blame as a recent event related to the large number of people infected—“families blame you thinking that you deserve to have HIV because in their minds they think you were sleeping around, but there is an improvement, now people with HIV are more accepted because more and more people are infected and the community members think that it may be them infected tomorrow” (sixtyone-year-old woman). Only one community respondent described someone as deserving the disease because of her behavior: “People in the area were saying she deserved to be infected by HIV because she was always seen in a different man’s car every evening” (twenty-three-year-old woman). Community members usually discovered another person’s HIV status when the person became symptomatic, and rather than blame them, such people were viewed with pity or fear. Much of this fear was linked to a fear of infection, with several community members reporting a decrease in stigma and discrimination as a result of education about transmission. In his study of the social construction of people living with HIV/AIDS in South Africa, Niehaus (2007) found that stigma toward individuals was not related to the association between AIDS and behavior, but was linked to their social construction as a sick person—which he calls being “dead before dying.” This was echoed by several of our community respondents: “Other families treat an HIV person badly saying, what’s the use of him or her because they are going to die” (twenty-six-year-old female). HIV brings this association, even if treatment can now extend life: “You know with the other diseases like TB, they are curable, you can take your treatment for a certain time and know once you have finished it you are done. But not with this, this one kills and it is not curable. Once you have it, you have it for life. I have not seen anyone who lives for long with this thing” (fifty-one-year-old male). We had expected the increased availability of HAART in South Africa to have some effect on this classification of people with HIV/AIDS as “dead before dying,” therefore affecting their acute disease status. However, the advent of HAART does not appear to have changed the community’s idea of the disease. HIV/AIDS was still seen as a disease with a long phase of relative stability followed by a



short acute deadly stage. As others have reported, people with HIV/AIDS were perceived as “certain to die” (Ndinda et al. 2007). Community respondents in our study reported that the stable asymptomatic phase could be prolonged for many years by adopting behaviors such as using condoms, eating well, stopping smoking and drinking, accepting one’s status, and exercising. Only seven of the thirty-three community respondents who had heard of ARVs reported them as a factor influencing the life span of a person with HIV, and only ten reported these drugs as a benefit of having an HIV test. The reported lack of impact of ARVs on the HIV/AIDS epidemic in general was contrasted by community respondents’ reports about the impact of ARVs for individuals. As one respondent reflected, “people who are using these tablets get stronger and stronger, they look healthy and start to do things on their own, go back to work and if you never saw that person when he or she was sick, you can never say that person has HIV.” The medication was also regarded as having major impact on their families. The idea that HAART could return “someone to normal” was often based on personal experience of having a friend or relative on therapy. Even so, the advent of HAART did not change the perception that for most HIV still meant death: “When you are told that you are positive, then you know that death is approaching.” As we and others have reported, knowledge about ARVs and what they do is limited (Chopra et al. 2006; Gebrekristos et al. 2005), and the dissemination of information about HIV treatment options is needed if ARVs are to have a beneficial impact on testing uptake (Day et al. 2003), stigma, or behavior. As we have reported elsewhere (Chopra et al. 2006), ARVs have not yet transformed how the AIDS epidemic is perceived in the community. We relate this not just to issues of knowledge and access, but also because ARVs were not perceived as new, but as one of many popular alternative therapies for HIV/AIDS. These alternative treatments, in turn, were attractive because of effective marketing by their producers, ease of access, and because they can be used without consumers having to disclose HIV status. The legitimization of alternative treatments and community perceptions of ARVs must also be viewed within the negative political discourse that has undermined the South African response to HIV/AIDS and the roll-out of ARVs. In an assessment of roll-out of HAART in South Africa, Nattrass (Nattrass 2006) concludes that the poor performance, given the country’s level of development and the scale of the epidemic, is related to a lack of political leadership. Nattrass links this to the cabinet imposing the roll-out policy on an unenthusiastic minister of health, who still warns about the dangers of HAART. As Nattrass (2006: 621) states: “Put bluntly, if the national Health Minister had prioritized upgrading the health system and rolling out treatment, the Minister of Finance would have provided her with the funds.” This poor political leadership has not only had an impact on the speed of roll-out—for example, it took a threat of legal action to procure the drugs (Nattrass 2006)—but has also had an impact on the perception of some community members of HAART: “She thinks the minister



was right. These drugs are said to be very strong, more especially if you are weak, there is no way they must be used.” Since naming a disease as chronic means that it can be medically managed, the failure of ARVs to minimize the seriousness of AIDS indicated AIDS’ nonchronic nature to many South Africans. Community respondents reported that being open about one’s HIV status to the community was rare. Gossip and rumor about the status of others was common, and has been reported in other qualitative studies as shaping folk discourse about AIDS (Stadler 2003). The descriptions of stigma that were most frequently reported by HIV-positive respondents in the study centered on this gossip. ARVs have entered into this gossip arena, and in some cases the gossip centers on whether the person was really HIV-positive: “Her sister is now starting to be nice to her, because she now looks well, her sister is starting to say maybe she did not have HIV.” Gossip and rumor are partly the effect of the euphemistic and covert discourse about HIV/AIDS. Since there is little or no public discussion of HIV/AIDS, allegations of disease are based on physical appearance, so convinced are people of the fatal debilitating nature of HIV/ AIDS. Someone who looks well and lives a normal life must not have the virus. Certainly they don’t talk about it. When healthy HIV-positive activists do, and make presentations, the audience remains mostly skeptical or confused. As HAART can change a person’s appearance “back to normal,” it can also change the community’s allegations about a person’s HIV-positive status. This may not lead to a change in the community’s perception of HIV as chronic or acute, but may rather reduce the public visibility of the disease.

Positive Women Not on Therapy It is important to understand how those who are HIV-positive and are not on HAART view HIV in the era of expanded access to treatment. Their perception of HIV has implications for their treatment-seeking behavior, their mental state, and for secondary prevention. The new initiatives to integrate and link the provision of HAART with services such as antenatal care (Myer et al. 2005; Abrams et al. 2007) have the potential to improve access and hope in this group. Interrupting maternal to child transmission not only addresses an important source of new infections, but by drastically reducing this transmission, women are able to contemplate a more normal life of partnering and childbearing. By sampling respondents from this maternal to child transmission cohort, we miss the perceptions of HIV-positive men not yet on therapy. Options for identifying them were considered unethical, infeasible, or more biased than sampling the PMTCT cohort women. Of those who had heard of HAART, many reported that they would like to be on therapy: “She said she would love to be on the treatment because she thinks it will make her strong and healthy,” and reported that being on treatment would be beneficial not just for them but for their whole family as they would be less of a burden. As one woman noted, “their families accept



them because they see they are strong and they are no longer a burden on them and they can live longer.” Despite the desire among women who had heard of HAART to be on treatment, few had actively thought about getting on treatment or had actively sought it. HAART seemed to be of little relevance to their lives. We related this to the fact many women considered HAART as only available for the critically ill, as difficult to access—“sometimes people don’t find them—[the clinic] always runs out of drugs”—and because many women were faced with more pressing worries related to poverty and isolation. One person commented that she would like to get ARVs and she felt they would make her life better, but the most important thing that would improve her life would be to get a permanent job. HIV/AIDS does not occur in isolation, and other life events such as illness and death within the family compound the impact of HIV on people’s lives (Hosegood et al. 2007). Just as other life events compound the negative impacts of HIV, they may also limit the potential positive impacts of knowing that treatment is available. If treatment programs are only seen as providing treatment and do not address or provide support for other negative events, then they may be of little interest to those who are currently asymptomatic and facing the difficulties faced by poor and disenfranchised people. The lack of engagement with the new treatment that we observed among the HIV-positive women may also reflect a strategy of avoidance or of minimizing the impact of HIV/AIDS on their lives. Strategies of avoidance have been identified among South African women as a means of coping with the physical and social impacts of HIV/AIDS (Dageid and Duckert 2008). Not engaging with HAART may have helped the women in our study cope with the uncertainties of treatment. Bernays and colleagues (2007: S8) hypothesize that “environments characterized by a fragile HIV treatment system foster the loss of hope, in turn linking with a weakened capacity for investing in the future through HIV treatment engagement.” The potential adverse psychological and social consequences of uncertain treatment delivery and of an environment that discourages hope can be damaging at the individual level and for the success of prevention strategies (Bernays et al. 2007). The HIV-positive women not on HAART interviewed for this study reflect the large majority of South African women living with HIV/ AIDS and displayed little evidence of hope. One respondent articulated that her feelings about HIV will change if she is able to access HAART: “When on treatment, she will stop thinking about death because she will know that she is going to live longer.” HIV only has the potential to be viewed as chronic when those living with HIV/AIDS know about HAART and are part of a system that ensures integrated and continued care for both those on HAART and those who are not yet eligible. The normalization of AIDS requires faith in the effectiveness of the medical management of the individual patient, as well as a health system that guarantees access and a high quality of treatment. This has not been the case for the



majority of poor South Africans. The importance of hope, and the link between hope, treatment engagement, and perceptions of chronicity, should not be overlooked. Hope provides a heuristic device for investigating the uneasy balance between overarching narratives of hope and promise generated by global discourses of ART scale-up and the lived experience of ART uncertainty in the context of fragile treatment delivery systems. Taken together, individual and group levels of hope and expectations can be seen as critical variables in securing capacity for HIV prevention and HIV treatment (Bernays et al. 2007) and also in changing perceptions about the acute nature of HIV.

Those on HAART Most respondents on HAART were diagnosed when sick and many had a similar reaction to diagnosis as the HIV-positive women not on HAART, in that they had thoughts of a rapid death: “I thought my days will be numbered.” Being put on treatment was perceived as saving a person from death, rather than being part of a medical management strategy: “Before she was put on treatment, she could see that she was going to die at any time, but being on treatment has given her hope.” This is reflected in the almost accidental manner that the majority of participants in the Eastern Cape and KwaZulu-Natal ended up on HAART—finding out about the clinics through friends or through overheard conversations, newspapers, or gossip. Although the clinic in the Western Cape had a well-structured referral system through primary healthcare clinics, private doctors, other hospitals, or support groups, the long waiting list at the clinic and the rigidity of the referral system dissipated any positive impact of this more integrated system on perceptions of HIV as a death sentence. Some respondents, however, managed to navigate the rigid referral system: The counselor told her that it is very difficult to get to [the HAART clinic] and the sister there at [the primary healthcare clinic] only refers you to do a “DC4” count when they see a person is very sick and comes to consult them at a clinic more than two times a week. The counselor told her that the best thing to do is for her to pretend she is sick and come to the clinic twice or three times a week so that when the sisters look at her folder they can see that she is becoming sicker and sicker. . . . So she went back to the clinic twice a week for two weeks . . . on her fifth visit to the clinic the sister wrote her a referral letter to the HAART clinic.

Researchers have called for improved referral systems and for the need to improve the community’s knowledge of HAART (Day et al. 2003; Gebrekristos et al. 2005; Myer et al. 2005; Abrams et al. 2007). As we observed in the Western Cape, even with its good referral system, provision does not meet need, and puts health staff in the difficult and demoralizing position of taking responsibility for rationing care (Bayer and Oppenheimer 2007).



As in other studies from Africa, taking HAART had a huge influence on people’s lives in terms of their health–family relations, job opportunities, fertility decisions, and treatment by the community (Jelsma et al. 2005; Smith and Mbakwem 2007; Louwagie et al. 2007). Many patients referred to taking HAART as giving them a “second chance” of a “normal” and independent life in which they “look the same as negative people.” Russell and colleagues (2007) found in Uganda that this return to “normal life” was dependent on an uninterrupted, affordable, and accessible supply of medication. All of the clinics in our study had long waiting lists. These were related to either staff and ARV drug shortages, limited opening hours, or a system of selecting patients through a weekly triage meeting during which only a limited number of patients were processed. Several respondents reported knowing people who had died while on the waiting list for HAART. However, respondents on HAART neither articulated fears of being taken off therapy nor of the drug supply running out. The clinics provided a supportive environment for most patients, and they felt secure in the drug supply. Russell and colleagues (2007) describe the economic and social challenges encountered by those on HAART. We also found that despite a universal statement of happiness at being on HAART, respondents faced many challenges. Some respondents were dealing with HIV-related disabilities: “The treatment has helped him to get better but it cannot restore the main important thing in his life, which is his eyesight.” The infectious nature of HIV/AIDS limited others’ ability to behave as if they had returned to normal: “She will never be pregnant again because she doesn’t want to go through the stress of not knowing if her child will be positive or negative.” The continued infectivity of HIV/AIDS makes it different from most other chronic diseases and necessitates an element of secondary prevention in the care of those on HAART. Several respondents reported that “looking normal” had changed how people in the community reacted to them, for example, beginning to treat them as normal, with normal expectations for interaction and work, as opposed to dependants draining community resources. However, many also reported a fear of stigma and would hide their medication or claim that they were for headaches or some other ailment. Being on therapy itself provided many challenges. Some of these challenges were related to having to negotiate a way through the health system. For example, one of the clinics did not have the facilities to treat opportunistic infections or other non-HAART-related issues. To ensure a complete set of medical records, this clinic instructed its patients to come with any illness, so they could be assessed and referred to the main hospital. Most patients, however, reported going straight to their local clinic or to the main hospital, due to the long waiting time at the HAART clinic; “she now prefers to go straight to X [local private clinic] because this [HAART clinic] is now too busy and too full and she has to wait for too long to be able to see the doctor here.” Where possible, patients attending this HAART clinic reported that they preferred to go to private doctors, who were seen to have more resources. In fact those who



followed the “correct” referral pathway were often faced with problems of drug shortages: “She was referred to X [main hospital] but they don’t get treatment. The treatment is always out of stock.” Interviews with health staff at the clinic revealed that the referral system often functioned poorly; this poor referral system has obvious consequences for the continuity of care required for those with chronic health conditions. As mentioned earlier, patients did not express fears or difficulties with drug shortages. They reported three main issues with taking the medications: time, food, and being away from home. Time had several senses—the regularity of timing doses each day, the lifetime of taking medication, and finally the waiting time for monthly prescription pickup: “The treatment should be taken at a certain time always, and forgetting to take it causes problems for yourself [meaning you get sick]. She further stated that this is difficult.” Another respondent described the problem as a generic one, repeating the bogus negative comments about the possibility of HAART in South Africa that have been spread in popular media: She heard that some people forget to take them on time, and she thinks this is due to the fact that Africans are not conscious about time. It is just not our culture to stick to be on time in everything that we do. [She heard about the problem of time schedule on a radio talk show about ARVs.]

Being “on time” is also a problem if you are away from home: It’s the problem of time and food. People have to take these tablets at a specific time and this is a challenge because people are not always at home and if you are not at home but you have your tablets with you, the problem will be food. When you take these tablets you have to eat first and other people don’t even have food.

Many respondents had identified novel ways of overcoming the challenge of time, including using the timing of radio and TV shows as reminders, asking their children or other people on HAART to remind them, keeping their medication where they would see it (e.g., in their lunch box), and, most commonly, using the alarm on their mobile phone. The most common reason for nonadherence reported in our study was leaving tablets at home and then not taking them because of a belief that they had to be taken exactly on time: “She was told by the counselors during lesson that she cannot take them two minutes after the given time.” To pick up prescriptions, patients usually had to travel to clinics and wait five to six hours. The lengthy travel and waiting times had a huge impact on patients’ lives: “Sometimes he waits three hours before seeing a doctor and this affects his work—he has to take unpaid leave.” Some respondents reported that they had difficulties finding transport money and would like to be able to access HAART closer to their community: “She knows for a fact that she is not the only



one that does not have money to come to the clinic. If treatment can be available in the community clinic, most of the infected people can go for treatment.” However, some clinics were more flexible in their appointment times than others, and asked when patients could come to the clinic rather than telling them when to come. This flexibility allowed respondents with jobs to negotiate time off with their employers and appeared to reduce the opportunity costs of being on HAART. One clinic also offered a delivery service to check up on and deliver medication to those who missed appointments, but this service publically marked people as recipients of the drugs and so was not used. The need for greater access is reflected in empirical studies. Wilson and Blower (2007) calculated that even if people living with HIV/AIDS were willing and able to travel 50 kilometers to reach the healthcare facilities that provide HAART in KwaZulu-Natal, only 50 percent of those in need would have access. Their models show that increasing coverage to all healthcare facilities in KwaZulu-Natal would have a smaller impact than anticipated as many clinics are clustered in urban areas. Wilson and Blower (2007) conclude that more, and better located, healthcare facilities are needed and that mobile clinics should be utilized. As well as increasing coverage this would also reduce a major challenge for those currently on HAART. In the rural clinic, respondents reported that taking HAART trapped them in one location: “He thinks about leaving X but he is worried to start a new doctor, this is not making him happy at all.” The issue of food is frequently discussed. Some of the medications come with recommendations to take them with food. Many believe that food is required to help the medicines work. Others discuss food as medicine. Family members often face the difficulty of providing food, especially the kinds of healthy foods that are stipulated: The challenge here is that these tablets are given to sick people and maybe they are not working or they are given leave from work. The problem is that by this time, they don’t have money to buy food, they don’t have a grant. It’s only at this time that they can apply for a grant and she believes it’s a little too late. Other people die before getting the grant. (Forty-six-year-old female community member who cared for her two HIV-positive sisters until their death and whose niece died on the HAART waiting list)

HAART and financial concerns are often uneasy companions. Although HAART allowed several respondents to return to work, for others jobs were hard to come by, and being tied to the clinic meant the employment opportunities were reduced. Even though HAART was free, as we described earlier, being on HAART had financial costs related to transport, food, and lost wages. HAARTrelated costs such as transport and lost wages due to long waiting times were identified as the main obstacles to adherence in a recent multisite study in three African countries (Hardon et al. 2007), and financial difficulty encountered was



the most frequent reason patients receiving HAART from a clinic in KwaZuluNatal stopped attending the clinic (Maskew et al. 2007). The economic impact of being on treatment was a challenge for many patients and our findings support the need for a chronic care system that focuses on more than just supplying drugs. Hardon and colleagues (2007) call for transport and food to be provided to those too poor to pay, many of our respondents would have benefited from such help. Economic and social support is key for the effective provision of HAART in the South African setting (Russell et al. 2007). The economic benefits of and problems with government disability grants were frequently bought up. Having their CD4 count measured when being assessed as eligible for HAART enabled many respondents to access the government disability grant: “The doctor checked her CD4 count and it was below two hundred, so the doctor wrote a letter for her to take to the welfare department to apply for grant.” However, in some clinics the doctors did not always facilitate the process: “He tried to apply for grant but could not succeed because he needs a letter from the doctor but the doctor doesn’t write him this letter even though he has requested it more than three times.” There were also issues for those whose CD4 counts were raised to above two hundred before they applied for the grant: “She thinks it’s late for her to apply because she is strong but she’s not going to stop treatment to drop the CD4 count. She heard that people are doing that.” The ability to gain or lose a grant based on the CD4 count added an element of economic instability into these patients’ lives and added extra stress and worry. Although our respondents reported a lack of economic support and great financial need, the clinics were already an important source of social support: “Before she started taking ARVs she was not feeling all right, she even thought about killing herself. The discussions she had with other people at the ARV clinic made her forget all that.” Several of the patients interviewed had made contacts while attending the support group/ARV lessons that provided support on an ongoing basis: “People on treatment have a close relationship, they sometimes come to visit him and keep him company.” Before starting therapy all patients had to go through a series of lessons to prepare them for HAART— when done well this was an empowering approach that encouraged patients to take responsibility for several aspects of their care such as adherence and “positive living” and can in some ways be thought of as preparing the patient for living with a chronic illness. The requirement for starting HAART of disclosing to a treatment supporter also seems to encourage support rather than cause forced disclosure. Only one respondent described a negative experience with a treatment supporter: “She mentioned that she changed her treatment supporter because her uncle’s son was shy to be seen by his schoolmates at the ARV clinic because they tease him at school saying he is HIV-positive.” Respondents reported that HAART had also influenced health worker attitudes: “The health worker’s treatment has changed because they see that they are making a difference in people’s lives. They are more friendly and caring now than before.”



Conclusions In this chapter, we have dealt with the impact of increased access to HAART on chronic and chronicity. With reference to the use of chronic in medicine, we have explored the acute–chronic distinction and the in-between area occupied by HIV/AIDS. Although our respondents who were aware of HAART reported many favorable responses to the intervention, it led neither to a reduction in stigma nor an increase in voluntary testing. HIV is still not considered a chronic condition. Rather, it continues to be regarded as an acute life-threatening event in the three communities we investigated in South Africa. In a biomedical sense, the answer so far is that the transitional cascade of popular thinking about the disease that has been proclaimed in many developing countries has not occurred. At some point ample provision of treatment to all who need it, and effective treatment of opportunistic infections, better nutrition, and other interventions, will increase the effective life span of those HIV-infected individuals. In this sense, there may be fewer acute episodes that are life threatening, and the terror and stigma associated with HIV may decline. However, this must be accompanied by a commitment to provide social and economic support to those who need it. But will this provision change the stigma and discrimination attached to HIV-positive individuals? Will it enhance disclosure? If the biomedical outcomes of transforming HIV/AIDS from an acute fatal infectious disease to a chronic condition are not certain, why should chronicity, with all its social and historical accoutrements, follow? How will the individuals and communities involved transform the public perception of HIV/AIDS to one of chronicity, since only they—not clinical programs—can do it? The reader confident in the impact of drugs may think that this is only a matter of time, and, of course, at some point in the future genetic accommodation of the virus, new treatments, vaccines, or other biomedical tools may be available that will bring this transition in their wake. But in the near future, will HIV/AIDS become a chronic disease? Again, we think the answer is no. These findings echo the recent Institute of Medicine evaluation of PEPFAR. Although PEPFAR was never exclusively a treatment program, treatment was the major component, consuming most of the resources. Condoms were relatively discouraged and prevention manacled to abstinence. Whereas major development organizations were included in treatment programs, prevention was often relegated to new players with little international experience, or new faith-based organizations with little science on which to base their efforts. Treatment, however, cannot be enough: Prevention, including secondary prevention, stigma reduction efforts, new promotion and policy for testing, promoting disclosure, enhanced education about the virus and treatment options, condom use and safe sex, all the armamentarium of HIV/AIDS interventions for the past two decades, still need to be promoted. There is no natural social consequence of



treating HIV/AIDS. This was realized as PEPFAR morphed from its singular focus to supporting an integrated focus. The reason why the transitional cascade has not occurred is not just that treatment has not yet been fully rolled out or that enough time hasn’t passed for the community to absorb this new intervention. There is an additional resistance that comes from the recognition that chronicity—the effect of a chronic disease on the lived individual and social experience of the disease—is a social, not a biomedical, fact. Chronicity—in this case normalizing a sexually transmitted infectious disease with moral, behavioral, political, and racial connotations—is a comprehensive, multidimensional social construct. NOTES

We acknowledge the support of the U.S. Centers for Disease Control, Global AIDS Program through the University Technical Assistance Project, Tulane University, and our collaboration with colleagues from the Medical Research Council, Cape Town, the School of Public Health, University of the Western Cape, the Health Systems Trust, and the Department of Anthropology, University of Johannesburg.

10 VVVVVVVVVVV Disability and Dysappearance Negotiating Physical and Social Risk with Cystic Fibrosis RON M AY N A R D


of progress are embedded in culture, where ideas of activity,

achievement, and future orientation inform a view of life seen as a trajectory, a narrative where the individual has the responsibility for creating continuity and permanence. Of course there is a great deal of slippage with this trajectory since the unpredictability of actual lives serves as an ongoing counterpoint to the archetypal social narrative focused on the linear, orderly unfolding of life. One of the enduring risks to this narrative is the body’s health—indeed, a cardinal element of embodiment is its indeterminacy. A common interruption to this narrative of continuity is the experience individuals may encounter with chronic illness and the subsequent uncertainty concerning its course. Although continuity in life is an illusive narrative, it is an effective one: It organizes people’s plans and expectations about life, how they understand who they are, and what they do (Becker 1998). For those who experience it, the vivid but unwanted consciousness of disability’s embodiments is a kind of dysappearance, a distancing between experience and its construction, arising from the embodied nature of the mind, a structure of experience that makes possible and encourages certain practical or interpretive directions (Leder 1990). The risk of dysappearance challenges the construct of continuity that is deeply embedded in social life. Disjunctions between the present and the future create situations of fundamental uncertainty, which may be magnified by the course of increasing disability. This uncertainty can make the task of defining and redefining the self problematic, where risk becomes a productive force for creating life’s narrative and a forensic framework for managing the course of disease. New forms of subjectivity are developed with the adoption of risk frameworks, whereby risk is viewed as controllable, as long as expert knowledge can be properly brought to bear upon it (Giddens 1990, 1991).




The Social Envelope of Dysappearance The highly contingent nature of this knowledge could be seen as it played out in the lives of adults with cystic fibrosis (CF). From 2000 to 2003, I conducted an ethnographic study of the lives and social networks of adults with CF—at home, in the clinic, in specialty settings, hospitals, and community settings (Maynard 2003, 2006). I also conducted numerous in-depth interviews with clinicians and followed physicians on a periodic basis as they treated a larger cohort of patients in the clinic. My intent was to learn the perspectives of people living with CF, as the disease framed daily struggles and challenged routine ways of living. When they were born, their parents were given survival scenarios, typical for this generation, of eight to ten years. When these patients subsequently reached the age of ten or eleven, they would be given a survival outlook in the late teens. And yet again, upon reaching this benchmark, the prognostication timeline would be reset, typically for a life span ending in the late thirties. When I began following these patients, they were in their midthirties and all were experiencing various stages of decline. This made attention to and interpretation of risk factors particularly urgent. The imperative of choice among competing systems of expert knowledge was fundamental to these individual navigations, as Sobo also observes in her chapter in this volume. The awareness of potential innovative treatments included sources that extended beyond the clinic to the Internet, journal articles, newspapers, and magazines, all resources that these patients followed closely for new information. But perhaps just as important was the subjective experience of their bodies and how their health informed and mirrored their narratives. This ever-changing flow of information, and their lived experience with CF, led to an awareness of the limitations of expertise and a reflexive dependence on the self to bring the future under the influence of present calculations (Giddens 1990, 1991). This is one of the fundamental dilemmas of globalization magnified in biomedicine and biotechnology (Lock 2001); choice and interpretation are played out against cultural values that entail a need to establish and maintain links to an imagined future (Becker 1994). In a sense, expert knowledge systems can become background noise, listened to episodically as health ebbs and flows. In this ebb and flow, this entwinement of health and knowledge, the choices made by patients, and the interpretations they select, can have profound effects on their life course. The people who participated in my study pursued lives of the “normal,” with the aims to marry, to have families and careers, to measure themselves against trajectories of the able-bodied, and in so doing, to “dysappear” their disease and its prognosis. For any particular individual, dysappearing their disease can lead to the productive taking of new risks, or it may lead to a dysfunctional interpretation of the true risks confronting them. In general, however, I argue that individual calculations of risk and dysappearance are undertaken against a background risk of social dysappearance that



moves along three dimensions: visual dysappearance, or the literal fading from view; functional dysappearance in terms of the loss of work, social, and family roles; and existential dysappearance related to psychic loss and the negotiations this entails. These three dimensions are wrapped up in an envelope of social dysfunction that produces these disabilities. Taken together, these dysappearances are generated by choices and aspirations that reflect the producing and consuming aspects of social life. They reflect the limitations of core social narratives more than the actual disability of the individual, resulting in frameworks that foreclose the possibility of other ways of being, different from the central ableist narratives that drive social life. Consequently the social envelope of dysappearance is a product of dysfunction, or the disabling framework produced by standard social narratives that privilege able bodies. The ableist narratives that dominate social life are reflected in risk-taking, and in pushing the boundaries in biomedicine that seek to produce and sustain an able, functioning body. For the two people who I consider in the following, this body was referenced as an iconic standard in their navigations and calculations of decline. Both Elaine and Marcia (pseudonyms) received their medical care in a specialty practice for adults with CF. Their clinicians saw them regularly, and knew each well. When the clinic was held, the day would begin “backstage” in the work area separate from the examination rooms. Here clinicians and nurses would reflect and gossip about the latest news concerning themselves, the news of the day, and the clinic patients. One morning, as I entered the room before clinic began, I sensed a heightened intensity in the conversations. One of the patients in the clinic was expecting another child, and she had been experiencing some complications (subsequently resolved). This morning the clinicians were literally wringing their hands over the limited future they saw for her. One remarked with a good deal of frustration, “She’ll never see this kid reach college; she’ll never see any of her kids to college age. What was she thinking? She’s got, what, ten years at the most?” Based on their knowledge of this patient’s health, and their projections of the clinical course her declining lung function would take, they were harsh in their observations. Later that afternoon, in a more reflective moment, one of the clinicians softened, and reconsidered the observations made earlier in the day: You know, we see patients all the time who’ve followed the prognoses [made] from childhood on, who’ve taken them in, so to speak, hook, line, and sinker . . . that they would be dead by their early twenties. So they do nothing, they don’t go to school, to college, they don’t pursue a career, they don’t really have relationships. So then, they actually reach thirty years old, their health is relatively good, and they still live at home with their parents. And they have nothing; they’ve got nothing going on. We see these patients and it’s like, whoa, where do you go with this? On the other hand you have folks who ignore (these prognoses), negotiate,



take a gamble, take risks, and they actually have something. Sometimes they obviously lose the gamble, but in the end, um, I guess you don’t really know. I don’t know about [the patient expecting another child], but she is living her life. I’ll give her that. It’s not a choice I would make, but she is living her life.

I knew from talking with this patient that her parents had been told that their tiny, sick infant daughter would die by the time she was three. The physicians had suggested that they might not want to take her home, but instead leave her in custodial care to die. Yet here she was in her early thirties, married, with a home and a family, a living contradiction to the prognostications made, and risks conveyed, at her birth.

Risking Dysappearance The axis around which calculations of risk rotate is the pervasive uncertainty that shapes the chronic illness trajectory (Becker and Kaufman 1995). This uncertainty is played out through daily negotiations in the management of reality, self, and narrative, alternately foregrounded and backgrounded through choices of appearance and dysappearance. Dysappearance can be seen in the management of risk narratives related to the biological reality of disease and in the management of the social risks to one’s narrative, of being sidelined in relation to core narratives of career, family life, and leisure. As the course of disease unfolds, the aspects of disability one chooses to recognize may no longer be a choice, as control of the practical and interpretive direction of life erodes. For CF patients, the cardinal marker of disorder and disease was the decline in lung function and the subsequent disability that emerged in their daily lives. This marked an ever-widening disparity between how things are and how they are supposed to be. Disability could emerge in myriad ways, along different scales, from no longer being able to run in a 10k race, to complex calculations of the time it would take to get from the car, across the parking lot, and up a flight of stairs to attend a meeting. Disability would sometimes show up as a bright red marker, a betrayal by the body as one coughs up copious amounts of blood (known as hemoptysis) resulting from a lung infection. As lung function declines, the disease can make aching and exhausting physical appearances that punish the body, and push the person with CF toward episodic and then chronic social dysappearance. As the body’s health deteriorates, it also strengthens its presence in personal narrative, becoming an ever-more intimate and tyrannical rule maker, narrowing the field of play as lung function diminishes. Drawing the future into the present is no longer a challenge, rather the future collapses into the present, and is subsumed by instinctive strategies for survival. The expansion of the present represents an unraveling of the chronic as a modifier for “disease,” with its implications



of repetition and unfolding into the future. The present is confronted by pressing navigations presented by the ever-expanding challenges of daily routine that fill time and space. This was described by Elaine, one of the people with whom I worked, as she recalled the afternoon just prior to her transplant. Her mother was arriving that day from out of town; unbeknownst to her she would also get a call that evening notifying her that donor lungs were available for transplant surgery, and she was to come to the hospital as soon as possible. Elaine was living in her three-bedroom house and had been home receiving a disability pension for the past three months. As her decline accelerated, she lived tethered to an oxygen tube connected to one of several large (approximately fifty-five inches tall and twelve inches in diameter) tanks delivered to her home twice each week. This tube extended about twenty-five feet from the tank to her nose, so that she could move through most of the interior of her home while connected to the oxygen she needed to stay alive. She received daily visits from a nurse, and had just had a visit that morning. After the nurse left, she was standing in her kitchen and noticed that one of the lightbulbs that illuminated the counter and sink area was out: So I’m standing there and this light is out and I think, I have to change that. I know it wasn’t the smartest thing for me to do given how sick I was, but you know I still had that chick thing going on, that the house had to look right because I had company coming [she laughs]. So I go out to the utility room to get a new lightbulb and rest. I take it back into the kitchen and put it on the counter and rest. I’m going really slow, right? This is work. So, I go out to the garage to get the stepladder and rest. Bring it in to the kitchen. Rest. Climb up and unscrew the burned-out bulb. Rest. Rest awhile longer. Climb up and put in the new bulb. Rest. Take the ladder back out to the garage. Rest. I came back in and slumped down on the kitchen floor and rested against the cabinets. All together this took me four hours. All those trips back and forth to the utility room and garage were really journeys. It was then that my mother arrived. My mom walks in and I could see her face, at first quizzical, like what are you doing on the floor there? But then I think she was stunned, as she realized how sick I was. I mean, yeah, no. I mean we’re close. I really love my mom. She knew I was sick, we talked on the phone regularly, several times a week, and I’d kept her updated. It had been about six months since her last visit, but until she saw me on the kitchen floor I don’t think she understood what it meant.

After Elaine had had her transplant, when she was convalescing at home and her mother was staying with her as a caregiver, another light went out in the kitchen. As she lay on the couch she watched her mom retrace the same steps she had taken to replace the bulb, keeping track of the time. It took her mom less than five minutes.



Living with CF can mean a collapse of the physical and social into a world where the simple act of changing a lightbulb becomes an extended journey. It can also be a universe in which calculations of whether or not a newborn with CF should even leave the hospital are exceeded wildly by a life that extends into the thirties and perhaps beyond. In between are the routines and rituals of life, shadowed by chronic illness and its challenges in terms of abledness and disabledness. These challenges involve ever-present calculations of disability, or the potential for disability, and what that means in a person’s life. Closely related to calculations of disability are the risks of dysappearance or diminishment that result in exclusion or alienation, where the modern conceit of controlling one’s body and its presentation is betrayed. Disability and dysappearance are in a sense an ever-present risk for both abled and disabled people, in a society where material practices constantly shape, engineer, and transform self-reflexive embodiments to mirror social norms, expectations, and beliefs. In my ethnographies that follow, disability emerges much more broadly in its relationship to dysappearance, through the relationship of the individual to cardinal performative markers of life trajectory such as school, career, marriage, and childbearing. Within the compressed time frames experienced by adults with CF, disability and dysappearance are malleable risks navigated through social negotiations that mirror society and the larger social economy. The social economies of disability involve the production of uncertainty and their relationship to consumerism. Zygmunt Bauman (2002) writes that technology magnifies the uncertainty under which people act, and this uncertainty is produced by a market economy “constantly at war with tradition” in a landscape where the individual consumes life as a neverending sequence of new beginnings that promise movement toward completion of the self. Baumann writes, however, that consumer life is a journey that cannot be completed with a destination that is continually elusive—just as “the self is infinitely expendable, so the object world continually takes on new attractions” (2002: 154). The individual is subject to an ever-changing landscape with new markers of consumption and performance that continually place their narrative at risk. These calculations of risk in consuming life are framed by a constant stream of new information concerning emerging treatment possibilities.

Consuming Narratives: Completing the Self Adult CF patients live in a society where, for many, the ideal individual embodies cultural values of independence, productivity, and attractiveness. Among the dozen patients who I followed, those who chose transplant and the risks associated with it wanted healthy, productive lives. They were willing to gamble on “the fullest life” and could not accept a more circumscribed existence with fewer risks. Living with CF was, in the words of one patient, to live “bigger than life allowed, to be a prizefighter, to be knocked down and get right back up.” They



sought to align bodily competences with inner states to, in the words of one, “ski, bike, and run . . . to return to my youth with a second lease on life.” Resetting the clock and returning to an “able” body requires a substantial toolkit. The skills needed to live successfully through transplant and beyond call for the discipline and skills necessary to follow a strict therapeutic regimen. In this arena, the patients are expected (and expect themselves) to live heroically, fight the good fight, and not accept limits. They seek health as a set of securities and assurances—securities in the present, assurances for the future—the regulatory flywheel of daily life and its possibilities (Rabinow 1992). Just as the physical body interacts with the social body, biotechnology is driven by technologies of normalization, technologies that combine to control anomalies with individual physical bodies, reshaping and restoring them to a normative place in the social body. “Strictly speaking the norm does not exist, rather its role is to devalue existence by allowing its correction” (Canguilhem 1943/1991: 77). Thus, the decision for some of those in my study to dysappear their disease, to ignore their physical limitations and rely on the possibilities offered by transplant, often reflected explicit decisions to “live life to the fullest,” to “not compromise,” and to “keep riding the technology wave until there is a cure.” These decisions to challenge the limits of their physical bodies and their life course reflect core social values where individuals can feel compelled to align the mutable and subjective experiences of their bodies with the narrative ideals of an ableist and consuming society. That is, they must be able to consume a normal life, with its series of “new attractions” and “new beginnings” to complete themselves.

Without a Resting Place The participants in my study were confronted by deeply personal and profoundly physical choices, literally written on their bodies through surgeries, intubations, and drug regimens. For those who decided to pursue transplant, their decision to gamble, “to go for it” and “not accept a less than full life,” reflected common social values. These values, these cultural comfort zones, seek to keep disease and disability distant—as a problem and a location of the other. To see someone with a portable oxygen tank and cannula snaking up to their nose is to see what we do not want to be—fragile, vulnerable, and “not living to our full potential.” One study participant who had a transplant no doubt hastened his decline by refusing to use portable oxygen—the stigma was too much for him. Another CF patient viewed portable oxygen as a way to avoid transplant, and looked upon his continued ability to get by with his own portable oxygen as a gift—“look at those people in wheelchairs,” he told me, “they are much worse off than I am— I’m lucky—very lucky.” In doctor–patient dialogue, the seeming transparency of a prognostication that outlines the risks, compromises, and tradeoffs related to transplant is often overwhelmed by cultural values based on instrumental action and belief, where



individuals are responsible for scripting their own meaning and producing a “normal” life trajectory. The technologies that root the patient in the present, spurring action and boosting energy, defer larger questions of meaning and limits. The stream of possible interventions, the uncertainty of outcomes, and the ever-changing limits on individual actions leave most individuals with no resting place as they try constantly to assess risk. These ever-present navigations of choice are a fundamental trait of globalization that expresses itself in biomedicine (Lock 2001), where abstract, expert knowledge systems intersect with pressing immediacy and intimacy in shaping the decisions that individuals make about their health. One patient, Elaine, expressed what it meant for her to live with the compressed life course: Living with CF, living with a fatal disease compresses things, or at least they did for me. I thought about my career and my “golden years” as being in my early thirties, and I felt like I was in a hurry. In my twenties as I became more ill, I had to readapt to less lung function each year. I remember being able to water-ski, where I glided into the dock after a long run and then, three years later, it was all I could do to get up on my skis, and once I was up, I had to let go—all my breath was gone. But posttransplant, I felt like I was literally a new person . . . I ran a half marathon one year after my transplant—I felt like I was on top of the world.

Elaine’s experience illustrates how CF can simultaneously compress time and accelerate the social construction of self and the pursuit of a normal life course. The presence of CF during her childhood and teenage years was something relegated to the background. Although the disease did rear its head with the occasional respiratory infection and the need to take medications, she was able to keep her disease compartmentalized, so that her family had minimal awareness of it. When she worked at her family’s garden shop in the summer, she would “sneak” her medications and an occasional rest break, but she maintained a vigorous routine with an active social life. Efforts to position herself as “normal” during her teen years were eventually betrayed by her CF. At the age of nineteen she was coughing chronically, and had respiratory problems—shortness of breath and tightness that concerned her. She went to see a new physician who “laid out” what CF was: And it really hit me! The doctor said that people with CF don’t live beyond their thirties. I’d never heard that before, where the short life span was made so explicit. I was really angry, in denial, but in some ways I grew up that day. I figured I’d basically be an old woman by the time I was thirty, if I lived that long.

Now she had less than ten years to pursue her dreams to have a career, marry, and live a normal life; her horizons and their subsequent narrative had



suddenly been rescripted (see also Manderson, this volume). Death and decline were not pushed out some fifty years as in a “normal” life span, but were present and visible to this nineteen-year-old. Elaine’s life was now confronted by compressed time frames and urgent imperatives: “I could tell that I was losing lung function throughout college—when I ran I had to readjust my levels of expectation, of performance. I needed to think about what this meant for my life, as the new normal.”

Post-Transplant: Navigating the Other Side Although the transplant community strives to normalize the procedure, to spin the details of transplant within the “gift of life” rubric, the body rages against this intervention, this transgression of moving the organs of one person into another (Joralemon 1995; Lock 1995b). The host constantly seeks to reject the newly transplanted organs—the foreign tissue that it doesn’t recognize. Accordingly, the newly transplanted patient must take a cocktail of immunosuppressant drugs for the rest of their lives—a constant reminder for the organ recipient of their tenuous state. By suppressing the body’s immune system, immunosuppressant drugs make the body more susceptible to infections, fungal diseases, and cancers. Against this background of medications, this disciplinary routine of therapies and clinic visits, Elaine measured time—both on a daily basis and in terms of her life course and the uncertainty it entailed. After her own lung transplant, Elaine’s steely determination and her ability to take risks showed in her intense focus on having a normal life: I’m so focused on a normal trajectory—education, career, family—they become so important—I was jealous of what others had. I was thirty-one and I had no secure, established life. I had been running without a resting place.

Elaine had indeed come through on the other side. Three years into her second chance, she seemed to have it almost all back. She had achieved her sense of the normal in her social and professional life. But that feeling of being in control and having a secure trajectory would begin to fray as red flags began to show at clinic visits, threatening her new, normal life with a series of small betrayals. Just a few short years after her transplant, Elaine’s lung function had dropped from 100 percent post-transplant to the mid-80s. Elaine was selfadministering intravenous antibiotics at home; they proved effective in regulating the infections that she was susceptible to. But there were no effective drugs for her larger challenge—chronic rejection—a narrowing of the small airways in the lungs. Chronic rejection or obliterative bronchiolitis (OB) is an incurable syndrome that affects two-thirds of all transplants. With OB, the distal airways in the lungs, the bronchioles, become inflamed, progressively stiff and fibrous. Consequently, they become distorted, narrowed, and plugged with granulation



tissue. Eventually this results in severe airway obstruction, and the lungs collapse with exhalation. No medication is available to restore lung function lost to OB. Elaine has begun to experience the early stages of this progressive obstruction, and reports that she can literally hear the “crackling” in her lungs. One of the clinical tests conducted on patients post-transplant is a bronchiectomy, a painful, unpleasant procedure where a scope is inserted down the patient’s throat and into the upper lobes of the lungs. For Elaine, these upper lobes continued to look healthy, but the decline in her lung function indicated that the distal lobes were beginning to shut down. The lungs have seventeen nested branches of bronchioles and the ones at the furthest remove cannot be examined; the only confirmation of disease presence is the slow decline in lung function. When this began, Elaine experienced physically what she had known from the beginning—that she was vulnerable to decline and the eventual rejection of her new lungs: Forgetting about timescale and where I’m supposed to be, I try to focus on who I am, and what I want to be doing. They are now doing retransplants. I’ve been lucky at riding the technology curve. There was even a story in the newspaper about a genetically engineered pig that does not pass on viruses in a retransplant. There are always new things.

Elaine was hopeful that she could overcome her decline, just as she had beaten the odds living into her midthirties with CF, and again when she had a successful lung transplant. Elaine was now fighting two diseases—CF and chronic rejection. She did everything possible to make each day count as she negotiated the decline in her lung function and overall health. For transplant patients such as Elaine, the social body and the physical body force the never-ending awareness that their newly acquired transplant identity is a compound of self and the normative other, shadowed by the likelihood of disability or hospitalization. But the cultural belief in progress and the promise of technology provided a trajectory that reassured Elaine: “I believe in progress, that you can’t stand still. I think it’s a necessity to colonize space—its money well spent—if we don’t advance ourselves we can’t get out of here.” But whatever degree of psychological accommodation and hope for the future achieved by transplant recipients in integrating new organs into their lives, it is unlikely that it represents the emotional triumph some would make it out to be (Joralemon 1995). Control of the transplanted body’s health is tenuous, maintained only through constant surveillance and intervention. As Elaine traverses the circuit of clinic visits and testing, home therapies, and periodic hospitalizations that tie her to the biological, she is driven by the social norm “to have what everyone else has.” What do they have, and what are the reference points that pull her forward, leaving her with no resting place? The norm is an ephemeral social construction transformed in its relation to individual social conditions, making the boundary between the normal and the



pathological imprecise, and the pursuit of what is normal elusive (Canguilhem 1989). Elaine has acquired a new, able-bodied identity that can be diagnosed and compared to others. These comparisons offer a set of normative measures by which to navigate her life and the daily regimens necessary for her survival post-transplant. In Elaine one can witness the intensity of the professional patient—the ongoing rounds of clinic visits and testing, her daily therapeutic regimens, and her self-discipline. For the other patient I follow here, the risks presented by end-stage disease and possible transplant were just beginning to emerge as her health declined.

Marcia: Negotiating the Social Body I first met Marcia and her husband Sam when I drove out to their home on a quiet, tree-lined suburban street. Marcia had just returned from grocery shopping as she ushered me into their immaculately clean home. Marcia—six months pregnant and with one of her three-year-old twin daughters on her hip—started unloading groceries in the kitchen while making calls to the medical clinics. She reported to the obstetrics nurse that she’d had three high blood sugars in a row—Marcia thinks that gestational diabetes has just kicked in, and a test is ordered. Next she called the CF clinic and asked the nurse for erythromycin for her cough, reporting that she was now coughing up thicker, greener mucus. All the while she was fielding calls for the landscaping business that she and her husband run out of their home. Marcia serves as the home base for their company, answering the phone and doing the books. Marcia is doubly challenged—she fits the genetic profile in that she has the disease, yet she doesn’t fit the familiar social profile for CF—she is a fourthgeneration Hispanic from Texas: Yes, if I have a new doctor I can tell it sometimes throws them for a loop, you know, you’re supposed to be Caucasian to have this disease. But I guess I have enough Caucasian blood on both sides that it qualified me for the disease [she laughs]! Sometimes it was a challenge for my parents when they took me to the doctor, like what do you mean, “your little girl has CF?”

Marcia shares the common burden with other CFers of trying to mask her disease, or to explain the disease to neighbors or friends who have no familiarity with it. Her high energy and fast pace, and her whirling dervish of a morning fielding calls for the family landscaping business while managing her CF, her pregnancy, and her two young children, leaves me somewhat awestruck. Over lunch I asked her about support with the children when she needed a break, especially with a third child on the way. She indicated that her mother-in-law helped watch the twins, and that she babysat her neighbor’s son, “banking” on reciprocity with his mother to help if and when Marcia needed it “down the line.” As Marcia cheerily remarked, “I’m building up my IOUs, for when I need



help.” With her sunny confidence, Marcia seemed up for the challenges she would be facing, managing her household, a new baby, and her CF. A year and a half later, as we sat one afternoon at her dining room table drinking coffee, things were different. Since the addition of a third child, a healthy baby boy, Marcia and Sam had shared with me what a quantum leap it was to go from two to three kids, as much as their initial jump from none to having twins. As Marcia said, “you run out of hands.” With their growing family, their increasingly complex business, and fights with her health insurance, it felt like the stakes in daily living were higher, the margin for error a bit less. Their social supports had changed as well. Marcia’s mother-in-law was experiencing heart problems and had been in and out of the hospital. Support from her neighbor also seemed elusive: She’s called a few times asking if I could watch her son, and I did the first time, she said it would be for just an hour, but it was more like three. And then it happened again. I don’t know what she’s thinking, I mean I’ve got three kids now, I’ve got to pace myself, and be more careful . . . with three kids it’s a huge difference and you would think she would understand my CF better. I mean, she’s an intelligent woman, educated, but she doesn’t seem to have a clue. The last time she asked me to watch Evan I had to say no. Oooh, I do wish that she understood more.

Alone with Cystic Fibrosis For a culture preoccupied with the normal, the experience of chronic illness is very difficult for the able-bodied to relate to. This can be seen in Marcia’s frustration with her neighbor’s lack of understanding. During her pregnancy, even though Marcia “looked” okay, it was critical that she manage her illness and her pregnancy so that she wasn’t overextended and fatigued. Ironically, the better she managed her illness the more invisible it remained, a private and individual burden. The more opportunity Marcia had to manage her disease and to present herself as fully “able,” the more pressing were the influences to fulfill the daily imperatives and norms for managing a household, her family, and herself. Mary Douglas (1992) has written that individuals choose their own risks and position themselves in relation to others in terms of these risk positions. In having a third child at the age of thirty-four, Marcia positioned herself at the outer edge of conventionally understood risk related to CF. She recognized that the odds of seeing her newly born child into his college years were poor. But with the birth of their latest child, Marcia and Sam have kept moving her projected life span further into the future: “Well Marcia, now we’re looking at another four years that you’ve got to stick around, at least . . . for sure!!” Together, they were banking on advances in treatment and continued progress in the battle with CF. Many of the clinic staff think Marcia is pushing her luck.



But clinical prognostications are not always correct. Marcia’s parents, like those of many CF patients in their thirties and older, had been told she wouldn’t live long enough to enter grade school, and here she was in her thirties, married with children. Marcia has clearly chosen to place herself among the “supernormal,” as she would joke—“the ideal family with Mom, Dad, and three kids.” She was placing her bets that her good fortune would continue, positioning herself with the young, able-bodied mothers of her age, unencumbered by chronic disease. And to the casual observer she would fit right in with that cultural image. However, these images homogenize, smoothing out differences and functioning as models against which individuals continually measure and judge themselves (Lupton 1999). As a young mother, Marcia is pulled into a social construct of the able-bodied, where she has tenuously positioned herself, making her body and its CF dysappear, even as the biological reality of CF keeps tugging at the able social body she strives to maintain. Where potential dangers dog one’s every action and choice, risks are established, maintained, or revised as part of an individual’s location within specific sociocultural settings. Alternative perceptions of risk, sometimes perceived by experts as irrational, often make sense in the context of an individual’s life experience from which they construct risk positions and interpretations that shape their identity. Risk positions, consciously held or not, are important to one’s self-identity as part of a social group or subculture (Douglas 1985). Marcia and Sam have their identities firmly positioned in the mainstream, as a young family and small-business owners, living in a comfortable home in a quiet neighborhood. However, their “normal” life is shadowed by Marcia’s likely decline, and its implications for their family. M A RCI A:  After

the twins were born, we did group CF things, social things,

gatherings, until the clinic became more concerned about cross-infection. So they discontinued them [these gatherings]. My level of health could change very quickly—it could change permanently. When I’m sick and coughing, it makes me think that I could decline. I don’t like the feeling, thinking about that. SA M:  I

didn’t want to talk about a port [a titanium disk surgically inserted into

a patient’s upper chest to facilitate the self-administration of an IV antibiotic at home]—it was another step toward something irreversible. And I didn’t want to meet or socialize with other CFers; I mean, I am almost paranoid about the idea of mixing with other bugs. I just can’t accept the lack of a guarantee. Marcia might catch something, come away with something. You know, they can catch up over the phone. M A RCI A:  Hemoptysis—coughing

up blood—is something that makes me pan-

ic—it’s happened once a year the last five years. It makes me think of a kind of cancerous TB thing. People outside CF don’t get it and that’s difficult to deal with sometimes, that people don’t get it, what it’s like to live



with something chronic, something you can die from. Americans like to be cured, whereas for other cultures, my parent’s and grandparent’s culture, death is part of the life cycle. I know that people are more uncomfortable when my sickness becomes more obvious. People will say, “But you’re fine!”—they don’t want to hear about your problems. I’ll have a friend tell me that they’re sick with a cold or the flu and I’ll say, “Well! At least it’s not terminal!” and they’re always a bit taken aback, but I mean it could be worse, much worse. People with chronic illnesses or impairments are the other to able-bodied people, and the consequences are isolating—you can hear it in Marcia’s words, and see it in her pained expression. She does a remarkable job maintaining her able-bodied persona, but the effort and the psychological isolation is compounded by the relative invisibility of her disease. Even for Marcia, CF is mostly a bundle of symptoms felt, but largely unseen—hemoptysis is the most visible symptom, a liquid red marker that ignites her fears and sends her imagination running. Most people know little about how to live with the limitations and uncertainty of long-term illness, and Marcia’s isolation is made even more complete by the limited social contact she can have with other CF patients—the risk of crossover infection is just too great. Sam reflects on these risks in thinking about the future of his family: SAM:  I

don’t want to talk about things in anticipation . . . I guess it’s a denial

that things could get worse. MARCIA:  There

are things about CF that don’t freak us out at all—like IVs—they

aren’t that big of a deal. But hemoptysis, um, hemoptysis freaks me out. SAM:

Well it [hemoptysis] probably occurred because you had been coughing for

two weeks, but you didn’t call the clinic. Marcia is good at everything else, except following up on her health. MARCIA:  I’ve

gotten away with everything all my life, so I’m ambivalent about

my health and following up. And I make comparisons in my head about calling into clinic when others are so sick. SAM:  You’re

going to catch something bad, but you won’t do anything about it

until you’re really sick. I’m concerned about handshakes, eating together [with other CFers]. You know. We’re not going to keep dodging the bullet forever!! MARCIA:  If

I had to be hospitalized, or I needed to go on oxygen, Sam would

be okay with it. He’s flexible, he always says you’ve just got to reset the bar, keep adjusting the line, like when we’ve had our kids, you reset the bar and move on, move forward. Sam and Marcia reflect on living with CF from different perspectives. Marcia strives to build up IOUs for child care when her health declines and describes her health history with CF in terms of getting “away with everything all my life,”



whereas Sam is skeptical of how well the IOUs will actually pay off in the future, and sees the immediate risks of Marcia overextending herself. He also focuses on immediate tasks that can be controlled—such as avoiding handshakes and following up quickly with calls to the clinic when Marcia’s coughing flares up. But, as Marcia explains, with their busy family, this is sometimes difficult: It’s tough with three children, there is more work—it’s physically demanding. When I was pregnant I had a hard time giving up time to health care—all the visits. When health care begins to intrude it becomes an issue of time. After I gave birth I had visions of grandeur, of getting back to my workouts. Instead I’ve been going back to bed in the morning. I’ve been very tired. Sunday we “forgot” about lunch. With the pregnancy, and sometimes now, it has been haphazard getting a hot meal prepared for dinner—occasionally we miss it, and we’ll just snack.

Marcia and Sam are focused not only on the risks that CF presents for the everyday lives of their family, but also considerations on the horizon: MARCIA:  You

are at a disadvantage because you don’t look like you’re ill—most

Americans don’t get the fact that you can have a chronic disease and it’s not curable. You go in to see the doctors and ask about some new innovation, some possible cure, you know, and they’ll roll their eyes. Don’t even think about a cure, they’ll say, think about staying well and preventing it [the CF from getting worse]. The doctor says that if you’re sick enough a cure doesn’t matter—you can’t regenerate lung tissue. Sam will say, “If that were you, I’d just want you to get listed [for a transplant],” but that’s not an answer. I know, I’m aware of the complications post-transplant. Sam sees transplant as the ultimate safety net. But it’s not that successful yet. SAM:  If

you wait for transplant too long you can have more complications. I

know that at best you get ten years. Look at that guy Gordon [pseudonym for another CF patient who underwent transplant]—he went from weighing nothing to being as healthy as you or I. But then he died. Just like that, he went south. You know it’s all a chance, but you’ve got to do something— we’re all dying anyway. MARCIA:  If

I couldn’t accept the change in me, I’d transplant.

SAM:  Well,

it’s a roll of the dice.


roll you’re quite willing to take for me!!

SAM:  Well,

there’s always new stuff.


I was at the clinic, the doctor said they’d sequenced pseudomonas

and you have the promise of these future treatments . . . all that genetic stuff is promising. They’ve isolated the marker, they’ve sequenced it, but they just can’t get to that last step of figuring out how to fix it!! It’s not much of a help for me!! So, I know that airway clearance and staying on top of everything is the only way to defer the big guns [portable oxygen, transplant].



As Sam and Marcia negotiate the present and try to assess these risks, they seem to be caught in biomedicine’s progress narrative, hoping for new breakthroughs even as they are haunted by the prospect of decline, trying to anticipate the course of Marcia’s disease.

Shaping Choices A clinician remarked to me about the difficulty in deciding whether or not to proceed with transplant: You have people who are fully disabled, pursuing sedentary hobbies, don’t complain, and are far less tortured. They are a brave group. They’re not trying to outrun their disease. What is more common is continuing discussion and sitting on the fence, trying to persuade oneself that things can remain the same, or that the clock can be reset, so to speak.

While science may have given people the possibility of increasing control over their lives, the emphasis on the self leaves increasing numbers alone with the task of establishing and maintaining values to guide them and make sense out of their daily lives. Disability leaves one casting about to rejoin the able-bodied, to take action to “beat” one’s disease. For some, power and social trajectory are more readily offered by the energy of surgical intervention, doing something, making a material choice to rescript their self-narrative in an able body. With transplant, the patient risks death, whereas accepting and living with disability can present a series of stigmas and small social deaths amidst the commodities of health, vigor, and work that shape the social body. Disability in CF constitutes a series of almost invisible sequelae: shortness of breath, fatigue, and infection that force eventual withdrawal from work and social environments. As noted, the physical markers of CF are typically felt, not seen. If there is a readily visible marker of CF it is one of absence—of the patient’s withdrawal to a more circumscribed world. With the onset of end-stage disease CF patients can sometimes prolong their presence in the able-bodied world but it comes with a price—they have to use portable oxygen—a very visible marker of their disease and their disability. With the rise of the body in consumer culture as a bearer of symbolic value, there has been a tendency for people to place more importance on the body as constitutive of the self (Frank 1991b). But more than the body per se, its importance lies in achieving the social norm for the body—able, healthy, and disciplined. In Elaine, this discipline, calculation, and tenaciousness can be seen in the elaborate medication and therapeutic regimens that she follows and carefully monitors. For a patient such as her, these disciplinary regimens can enable a personal narrative that mirrors the life course of her able-bodied peers. Biomedicine’s seeming promise of new innovations, therapies, and treatments that focus on a cure is a profoundly modern narrative understood as a



universal trajectory of individual emancipation, constantly evolving rational mastery, and continuous technological change (Williams and Bendelow 1998). To engage in this progress narrative, one must be able to deploy certain educational resources, symbolic goods, and cultural competencies; individuals who cannot are likely to find themselves further disadvantaged and marginalized. Consequently, pursuing transplant requires the deployment of significant financial, social, and cultural capital, where treatment is often filtered through a prism that defers candid conversations of disability and death. As one physician reflected: I don’t think that doctors, patients, families, or our society know how to embrace the possibility of mortality until it’s the only possible outcome. We keep coming at the dying patient with an arsenal of interventions, a set of heroic and many times false hopes, until a meaningful discussion of the patient’s death is foreclosed by the actual passing of the patient.

CF patients are often confronted with choices driven as much by the risk of dysappearance as by disability. The desire of many patients to pursue the normal as measured by markers of physical activity, career, and marriage reflect normative measures that permeate social life. These notions of life reflect a system of exchanges and signs within a system of power (Baudrillard 1981), as routine as Marcia’s building up of IOUs for child care with her neighbor, or Elaine’s broader calculations of “career” and “living life to the fullest.” Disability and ability, appearance and dysappearance structure life choices that range from intimacy to career to leisure. These choices, when measured against an able-bodied social norm, can push patients to sacrifice their longer-term health as they seek to reframe the risk of dysappearance with a life trajectory that provides continuity and a sense of permanence. As chronic disease and disability emerge in different forms for different individuals, we may benefit from pulling back to examine our way of life, our daily patterns, and our social fabric. Does our culture of radical individualism, our notions of ability and disability, and our singular pursuit of happiness serve us well, or do we need to develop new structures and routines of community, empathy, and being? Of what is better and what is best?

11 VVVVVVVVVVV Caring for Children with Special Healthcare Needs “Once We Got There, It Was Fine” ELISA J. SOBO

Over the last year, I’m putting together a puzzle and I feel like I finally have all the pieces, now I have to fi x the map and just go for it. It would have been nice to know all this six months ago. (Linda, 33, mother to Juan)

It wasn’t something we wanted to jump in to . . . but it’s the best thing we ever did. Once we got there, it was fine. (Pamela, 41, mother to Jane)

Orientation and Itinerary With no stable map and no single point of entry, how do the parents or guardians of children newly living with chronic or disabling conditions gain access to and navigate through the various components of the healthcare system? How do they master what is generally, for them, a strange new world? In asking and seeking to answer these questions, my focus has been on the experiences of U.S. parents of very young children (aged up to five years) who have disabilities and health conditions that, although sometimes profound, are nonetheless not life threatening in the near term.1 This chapter is based on ethnographically oriented studies of a clubfoot clinic and of families with very young children with Down syndrome. I draw also on nearly five years of participant observation at the regional children’s hospital that served these parents.2 I begin by introducing the general category of children with special healthcare needs (CSHCN) and reviewing the current context of their categorization and care. For perspective, I include as epigraphs statements from participants in the research presented in the next section, which describes parents’ encounters 212



with the health system as they try to optimize their child’s care. I focus on the lessons and learning curve that many parents experience as they gain mastery over the care-related roles, rights, and responsibilities that come with parenting “special” children. A data-derived model provides a general map of the territory that, from their perspective, they must master. The fact that this model represents the parents’ point of view on the mastery process is paramount. A good deal of advocacy media and a growing scholarly literature address the challenges faced by parents of CSHCN. However, parents enter this world with no clear path to that body of knowledge. My key interest is how they talk about this dilemma. Findings call to question temporally oriented theorizing common in the literature: The parents focus more on space than time. The geo-spatial journey metaphor is not my own; it is a prominent aspect of present-day pediatric disability discourse. As demonstrated in this chapter, the journey referenced is usually unplanned; some new parent literature likens it to a vacation routing diversion whereby a family that had intended to fly to Italy, for instance, is rerouted to the Netherlands and, rather than seeing red roses, they get to wonder at blue tulips (see also Rapp 1999: 291–292). This idea was introduced into circulation by CSHCN parent and peer-educator Emily Perl Kingsley in a widely disseminated 1987 essay, “Welcome to Holland.” The essay is seen, for instance, in the National Down Syndrome Congress’s “new parent package”: “The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.” 3But unlike a vacation, the CSHCN journey is often not a temporary diversion. It has no knowable or exact end point for many parents and children. Some exist as sojourners; others, immigrant settlers. Even “cured” children have periods of regress, for instance, in scheduled follow-ups to ensure remission’s enduring presence, or when relations reposition the child in the land of the sick by asking about his or her health or looking for signs of an affliction’s resurgence or evidence of damage it may have done. Further, the intensity of the journey can be quite uneven, as a child’s health status oscillates between exacerbations or crisis points and phases of relative stasis or quiescence (remissions). This indeterminacy notwithstanding, the excursions of parents of CSHCN in the United States have much in common both socially and culturally. In this chapter, I chart this commonality, which centers on parental acculturation to the healthcare system.

Part I: Background Who are our Children with Special Health Care Needs? It’s like a group you never thought you’d join but I’ve met wonderful people and older people with Down syndrome and have realized that, there’s



lots of stuff they can do. . . . They’re going to school, they’re speaking for themselves, so that changed my perception of Down syndrome. (Vickie, 42, mother to three-year-old Jennie)

Biomedical advances and a general increase in living standards in most Westernized nations have led to a historic increase in living CSHCN. The profile of this group also has changed. As Ruth Stein writes, “In earlier eras, far fewer children who developed impairments of their body systems survived for prolonged periods”; even those with non-life-threatening impairments or anomalies “were more subject than healthy children to early death from infections before the advent of effective immunizations and antibiotics” (Stein 2007: 6). Today in the United States, most such children are far better off, medically speaking. Their numbers are augmented by children with conditions related to modern life (such as automobile-related injuries). Another important epidemiological shift concerns birthrates of infants with genetic or congenital disorders. Advanced prenatal diagnostic systems that can pinpoint the likelihood of a given condition (such as Down syndrome) have underwritten pregnancy terminations by parents who decide not to carry an “at risk” or prenatally diagnosed fetus to term. The implications of this for the sociocultural reception as well as the quality of care for people who do live with these conditions or who have children with them are not yet clear. Quality of care may suffer due to the decrease in clinicians’ experience serving children and families with these conditions. Stigmatization of both parents and children may increase in keeping with a constellation of ideas regarding prevention, parental responsibilities, and which lives are worth living. Today, an estimated 15 percent to 20 percent of all U.S. children have a significant ongoing healthcare need. Asthma, seizure disorder, cerebral palsy, mental retardation, and attention deficit hyperactivity disorder or ADHD are among the most common conditions reported. Other representative although less common categories include Down syndrome, congenital heart disease, spina bifida, sickle-cell disease, arthritis, hemophilia, and HIV/AIDS (Perrin et al. 1993). Clearly, the lives led by children with these varied conditions will be different indeed. So what defines all of them as CSHCN?

What’s in a Name? [Disabled] individuals that are like older maybe thirty or forty . . . seem to still be . . . just coloring, not holding jobs, not working, not having relationships, not out in the community. . . . And I think “oh, you probably didn’t have the advantage that we have today,” and we have early intervention. (Patsy, 42, mother to two-year-old Justine)

Being classified as a CSHCN has important implications for which children can receive what interventions or care, where, when, from whom, for how



long—and for who will pay for that care or intervention (Beers et al. 2003). It was not until recently that clinicians and researchers began to promote a noncategorical approach: one concerned with issues that arise in relation to all special healthcare needs conditions (see, for example, Pless and Pinkerton 1975; Hobbs and Perrin 1985; Jessop and Stein 1985). The descriptive label Children with Special Needs (CSN) has been used since at least 1981, when U.S. Maternal and Child Health Bureau (MCHB) staff tried to set a unified research agenda for what was at that point a motley conglomeration of interest groups rather than a “population” per se. Major efforts were made to increase consistency in how the classification was defined for programmatic and research purposes. CSN became CSHCN, specifically highlighting health care (Stein 2007: 8). In one of the first attempts to delimit CSHCN, one research group proposed that a child’s eligibility be based on the presence of (a) a biological, psychological, or cognitive condition of (b) at least a year’s duration, and that (c) entailed a “consequence” (Stein et al. 1993; see also Perrin et al. 1993). According to Stein, her group’s 1993 article “was the first to focus on identifying the child, rather than the conditions, and to do that by explicitly examining the consequences that the condition(s) has on the child’s life” (2007: 9; emphasis in original). Consequences were defined as including “functional limitations compared to age mates, dependency on compensatory mechanisms or assistance, and use of services above those generally needed by age mates” (2007: 9; see also Stein et al. 1993). Culturally, as some of the parent quotes included aboveconfirm, one crucial consequence relates to a person’s ultimate confinement to eternal childhood status (“just coloring, not holding jobs”). The consequence criterion is hegemonically comparative, prioritizing what otherwise might be viewed as simply a mathematical average. Notwithstanding, according to Stein, this approach “allowed for the inclusion of children who present diagnostic dilemmas”: those with persisting problems that had not (yet) been pinpointed as related to specific, delimited conditions.4 Stein also notes that it offsets the capacity of condition-based lists to be “biased toward identifying children with access to care, because these children . . . are more likely to be diagnosed than children without access to care. Another advantage of counting children, not diagnoses, is that a high proportion of children with special needs (more than one-third) have more than one diagnosis” (2007: 10).

Knock-On Effects: Markets and Marginalization I read research that if kids with Down syndrome have occupational therapy, by the age of eleven months, that they tend to do far better—so I thought, okay, he’s eleven months old, get me an OT! (Deborah, 40, mother to two-year-old Kenny)



As well as increasing access to care, the newly broadened funding for screening services also fueled growth among those who could supply them. This in turn may have fostered the overuse of rule-out testing referrals by clinicians worried about culpability for missed cases. Clearly, in addition to turf wars between groups of scientists competing for the right to define CSHCN, the political economy of chronic disability, as described by Sue Estroff (1993), was at work. In describing the growth industry of mental health provision, Estroff identified the “odd coalition” between relatives who want to support and protect their ill relations and employees who want to protect their jobs (1993: 269). Accordingly, even CHSCN who will never grow up to contribute to the economy as independent and optimally productive adult wage earners (a lack that is essential to Estroff’s “outline of chronicity” and to the statutory category “disabled”) can have great economic value. The benefits of being labeled a CSHCN notwithstanding (e.g., potentially enabling service entitlements), labeling also can have costs (e.g., disabling sociocultural denials). These costs may be particularly heavy when what is labeled is not a clear or curable disease state, or is in remission. In such a case— for instance, when a person has three limbs—sociocultural factors may take center stage in disabling an individual. Estroff (1993) demonstrates how this is so for schizophrenia, a biologically indeterminate affliction. Schizophrenia as a label does the lion’s share of work in creating the condition’s disabling “chronicity” as well as in maintaining it. Estroff shows, in support of this important contention, that (for individuals on medication) “symptoms were among the least often motioned and least observable sources of distress or dysfunction” (1993: 274). Of course, the equation does not hold for all chronic conditions or all of the time. Chronicity is not a totally constructed artifact. Moreover, children born into the CSCHN category and their families can be very comfortable with their conditions. But many CSHCN have distressing enduring symptoms as well as signs of disease (e.g., in cystic fibrosis; see Maynard’s chapter, this volume), functionally debilitating malformations (e.g., a cleft lip and palate), or disabling developmental delays (e.g., speech challenges) that intervention over time can help offset. For instance, clubfoot, untreated, will hinder mobility and cause pain—whether or not the child affected is labeled as a CSHCN. Still, as Gail Landsman notes, the term CSHCN reflects the biomedical model and, as such, it positions a child’s functional disability or physical difference as disease—locating it, as if a medical problem, inside the child. In doing so, the biomedical model designates the child’s difference as an individual, internal defect. Concurrently, it situates the clinician as the expert from whom assistance in alleviating this “defect” must be sought and focuses parents on the task of changing the child rather than the environment lived in. It diverts our gaze away from disabling features of social networks, built environments, and cultural practices, directing us to look instead for improvements that can be instantiated



in the individual body of the disabled child. And, as Landsman notes, “Although many parents do indeed seek cures, some parents and disability rights advocates interpret such cure-seeking behavior as attempts to eliminate diversity and as disrespectful to disabled people” (Landsman and Van Riper 2007: 83–84).

The Same but Different There’s a lot of insensitivity regarding language . . . as far as labeling, you know, “Oh yeah, he’s a Down’s. You know, she’s a Down’s.” You kind of lose that individuality of each person when people do that. (Cheryl, 45, mother to eleven-year-old Ben)

Beyond its contribution to the overall diversity in form and function of the human race, the CSHCN population is internally diverse. Every CSHCN family faces unique challenges and rewards in respect to the configuration of SHCN confronted and the personality of the child involved. Moreover, parental experience will vary, too, with age, gender, occupation, class, ethnicity, immigration status, and financial situation, and so on. The status of each variable can have a multiplier effect. Further, responsibilities can accumulate as new diagnoses build up, or service entitlements are expanded. For instance, a child identified on sight (by a qualified pediatrician, of course) as having clubfoot can then be diagnosed with hip dysplasia and then head and neck problems as surveillance is stepped up. A parent already balancing numerous health services may need to add educational services when his or her child reaches school age. As the foregoing reminds us, each child is on a developmental trajectory, moving (sometimes in condition-dependent ways) from infancy to childhood to adolescence and beyond. This complicates things, increasing the indeterminacy of what an infant or child’s present condition may mean later in life. Further, individual abilities and challenges vary no matter how stable respective conditions may be. All this indeterminacy may create great complexity for diagnostic, prognostic, and therapeutic service efforts, as care providers try to disentangle a child’s potential functional deficits (e.g., in speech, mobility, or vision) from his or her developmental status. The uncertainty of whether a child is simply delayed in development or actually stopped at a particular developmental time-point, with no change expected, may appeal to parents who would like to remain hopeful of change (Landsman 2003). At the same time, it can be daunting and parents may press hesitant clinicians for certainty to offset the stress that not knowing can bring.

Health Services Landscape I want her to have the best start that she can to be able to accomplish as much as she can. But, it’s like you lose . . . the first year of their lives



trying to figure out how the system works to get them the help they need when there are so many milestones between zero and twelve months. If I had to ask for anything, that’s what I’d want—someone to give me [an] owner’s manual on how the system works. (Heather, 29, mother to baby Lucinda)

The U.S. healthcare system was built on the back of military medicine for acute care. It came of age at a time when scientists believed that all diseases could be cured. U.S. healthcare standards, therefore, generally reflect the historical assumption that care will be for specific, discrete, acute, curable conditions. Today, however, chronic care accounts for the bulk of U.S. care utilization and spending (regarding pediatric costs and utilization in particular, see Ireys et al. 1997; Newacheck et al. 1998). Although things are changing somewhat for those with access to well-resourced healthcare organizations, generally, instead of having a “medical home” (but see Homer and Cooley 2007) or a multidisciplinary clinic to go to, CSHCN receive care from several separate clinicians and even facilities. Even those with access to multidisciplinary clinical care generally must first find their way to, and then through, a maze of options. With each layer of participation chances for care quality problems arise. Sometimes, chain reactions ensue, leading to otherwise preventable catastrophes.

Building Mastery through Acculturation I basically said, “We work with her every day,” and by saying that it was a detriment to ourselves because she’s like, “Great, then you’ll just get a consultation.” So, I’m learning the game now . . . I finally figured out the rules after a year and now I’m, “Okay, I can play this game.” (Abigail, 32, mother to baby Maria)

One way to shed light on how to gain competence in regard to CSHCN, whether in a parental or provider role, is to look at how people gain competence in clinical professions to begin with. Within nursing, Patricia Benner (2001) identified five levels of competency through which nurses progress. After the Dreyfus model of skill acquisition (Dreyfus and Dreyfus 1986), Benner termed this a transition “from novice to expert.” Expertise emerges from practice and experience, not books (see Sobo and Kurtin 2007, section 3). It is quite possible that parents, too, move through competency levels from novice to expert as they master the skills entailed in navigating or managing the adult- and acute-centric healthcare system and ministering to their child’s particular chronic healthcare needs. If so, what are the areas that they must master? Research findings regarding these questions can inform future efforts to improve care as well as to foster better understanding of what parents go through, and why.



Part II: Foreground Charting the Parent Experience: Research Methods We have a specific calling to bring out his full potential, that’s our role, our job, as his parents. (Patricia, 39, mother to eight-year-old Billy)

To better understand the parent experience, I undertook a long-term, collaborative, interdisciplinary program of research carried out through what is now Rady Children’s Hospital San Diego in California (hereafter, Children’s). That research included work with parents of CSHCN, beginning with a federally funded study regarding barriers to care as they are experienced by the English- or Spanish-speaking parents of school-aged CSHCN (Seid et al. 2004; Sobo et al. 2006).5 It also included consideration of a weekly clubfoot clinic, and an interview study involving English-speaking parents of thirty children with Down syndrome.6 Down syndrome (hereafter, DS) is an exemplary special healthcare condition because it includes both physical and mental dimensions, demanding both developmental and medical attention. Further, it often entails numerous subsidiary diagnoses, such as heart, hearing, respiratory, and joint conditions (American Academy of Pediatrics Committee on Genetics 2001), and it has no biomedical cure. Clubfoot, in contrast, is a generally discrete and usually treatable condition existing on the less intense end of the CSHCN spectrum. Theory-building efforts related to the apparent overlap between the clubfoot and DS findings, and the ways in which they added to findings from the barriers to care work, were directly supplemented with a longitudinal series of interviews in which the DS project team got to know four more families of children with the syndrome—in this case, new babies (Dennis 2004). However, in contrast to (and building on findings from) the original research, these were specifically focused on how one learns to navigate the so-called system of health care for a high-needs child.

The Model: What Was Mapped? When the project team analyzed the transcripts from the one-time parent interviews, a host of complex issues was revealed (Prussing et al. 2004, 2005). The longitudinal interviews helped to crystallize these and other issues into three categories of overriding concern: initial diagnosis or classification, care coordination, and stigma management (Dennis 2004). The content of the clubfoot clinic participant observations could be organized quite easily using these overarching categories. Further, much of the data from the barriers to care research fit squarely within the care coordination category of the longitudinal interviews. A model was built using the categories; it is shown in Figure 11.1. A disability first must be identified and classified (“diagnosed”) for care to commence in full.



Stigma Management

Care Coordination

Culture work (w/discourses) Social work (educate, support)

Case management (two continuums) Knowledge procurement & management Advocacy & Activation of Providers

Initial Classification Accuracy & clarity of information Evaluative tone of information Speed of diagnosis

FIGUR E 11.1 Noncategorical model of parental activities in managing health care for

CSHCN. The model is dynamic. For some conditions, a number of subsequent, subsidiary diagnosis phases are entailed. Further, interactions in one sphere affect interactions in the other spheres. Experiences amass interactively over time, and are subject to revision or reinterpretation. Source: Adapted from Sobo and Kurtin (2007).

However, the model is dynamic: Classification is not an instant process. Diagnosis itself can take time, and the experience of being diagnosed or labeled informs the direction the care trajectory takes. Further, although CSHCN are perhaps most vulnerable to suboptimal care during the critical period of discovery that occurs when most of their problems are first recognized, for some conditions, a number of subsequent, subsidiary diagnostic phases are entailed. And there may be periods of exacerbation and periods of remission. So the activities the model charts can be spiraling, with some experiences occurring more than once, or simultaneously. Finally, interactions in one sphere affect interactions in other spheres, and experiences build up interactively over time, affecting one’s experience in whichever here-and-now is in question. The examples following illustrate in more depth the experiences that the model summarizes.

Initial Classification Without being asked, many of the DS parents focused their comments on how communication surrounding their child’s DS classification affected their



adjustment to the condition and their attitude toward the health system. This demonstrated concretely how important this stage was to parents. According to some parents from each substudy, the speed and tenor of initial classification was crucial: It was here that foundations were laid for their enduring relationship with the healthcare system and for their adjustment to the addition of the exceptional child to their family circle. It was during the initial classification stage that various cultural frames or ideals were first activated regarding issues such as mental competence, physical prowess, blame for anomalous births, and the role of the healthcare consumer (see also Prussing et al. 2004, 2005). A child’s diagnosis or initial classification can be devastating if mishandled. Many parents were presented a diagnosis—with all the disease-related connotations that the term diagnosis carries—in catastrophic terms. One parent lamented, “All they tell you is the bad stuff. They don’t tell you any of the good stuff . . . They don’t tell you, ‘Don’t worry, your child will melt your heart and smile at you just like how all your other children did.’” Often, parents described a sense of stigmatization, particularly regarding mental retardation. One DS parent told us, “I feel that there’s such a huge stigma with mental retardation. There’s probably no more difficult words [to hear] other than probably ‘Your child is dying.’” Upon diagnosis, several DS parents were provided with information about adoption options, which they found inappropriate due to the suggestion that the infant in question was unwanted or not good enough to keep. The experiences of parents of children with clubfoot were different, demonstrating how important it is for noncategorical modeling to draw on a range of conditions. Although some of these parents were mortified by the sight of their child’s foot or feet and the associated threat to the child’s mobility, and some were troubled by attributions of causality for the disorder, they generally did not worry about their child’s mental capacity. A clubbed foot can usually be deflected over the span of two to three years. It is ideal to start treatment immediately if adjustments are desired. Certain conditions associated with DS also should be seen to immediately. However, as with DS, it is not until an official diagnosis is proclaimed that care can move forward. For the parents of children with clubfoot, as for many parents in the DS group who have to wait for genetic test results, getting a formal diagnosis can entail a chain of referrals and a good measure of waiting. For some DS parents, until genetic tests came back, there was still the possibility that nothing was wrong, and the extended uncertainty was distressing. Referrals were not always automatic or system driven. Parents who noticed cause for concern began to learn, there and then, that they had to advocate for their children. This was true even for some of the parents of children with clubfoot, which is a very visible condition. Each time a new clerk or clinician was brought into the equation as the chain of referrals (often, self-referrals)



grew, parents were forced once again to explain themselves and then to allow someone new to scrutinize, handle, and (at best, considering the manipulations generally undertaken) annoy their baby.

Care Coordination Once a child had been diagnosed, care coordination began in earnest. The struggles of parents from all groups were similar, but the struggles of the DS parents generally were more intense and more extensive due to the larger number of services they typically had to coordinate for their children. Problems with referrals persisted. For example, “She’s been referred to OT [occupational therapy] at two months old and she’s almost six months old and I still have not heard anything from OT,” said one mother. The need for parents to act as care coordinators has partly to do with the fragmentation of the healthcare system, reflecting the system’s legacy premise that care will not be continuous. This is made more salient for families of CSHCN by the variety of specialist care that needs to be organized and articulated. The more complex a child’s condition, the harder the care coordination will be; but in any case, parents often were shocked at how much of this work is left up to them. For example, one mother of a child with DS explained how she could not exist simply as “just a mother” because she had to become what she called a “caseworker.” Her case management role meant devoting extensive time and energy to enforcing her entitlement to services and coordinating those that best served her daughter’s needs. Another way of thinking about the extensive workload entailed was to fold it into one’s identity as a parent or, in this case, a super-parent: “Having him, with Down syndrome, has allowed me to . . . be the ultra-mom I always wanted to be.” Here, the culturally constructed definition of “the good mother” is made use of, giving meaning and significance to the work entailed in parenting a CSHCN. Parents who highly value the parental role can find some solace in highlighting the fact that, unlike other parents, they will never be discarded by their children. This benefit does, of course, have costs. The high workload associated with the coordinator role stems not only from the system’s assumption that care will be acute, it has also to do with the differential epidemiology of childhood disease and disability; for instance, while one in three adults has heart disease (American Heart Association 2006), only one in about 850 children have either clubfoot or DS (March of Dimes 2001a, 2001b). This diffuseness makes it difficult for any one physician to have full knowledge of all possible conditions, and it is therefore imperative for parents to case manage their child, assuring her or him access to all appropriate services, and to manage their providers, for instance by passing information or knowledge on to the providers and by encouraging them to use the information as appropriate and to look for additional information on their own. Being put in this knowledge management position can be a shock: As one parent said, “My



misconception . . . was that I wouldn’t be the expert. That somebody else would know more than I did.” DS parents often said that they recognized the time and resource constraints that providers faced and so tailored their expectations accordingly. They did, however, expect providers to show an interest in their child, ask questions, and take the initiative in learning a little more about DS. In talking about her child’s first (and former) pediatrician, one parent remarked, with no admiration, “His office didn’t even know that she’s supposed to be on a different growth chart.” An opposite problem was the tendency of some providers to ascribe all of the children’s ills (e.g., rashes) to DS rather than to acknowledge that (or even explore whether) they were simply the typical ills of childhood. In the case of clubfoot, this did not seem to be an issue, largely perhaps due to the nature of the condition. However, some parents did wish that the specialists who provided clubfoot care could advise them on other infant care issues such as rashes or umbilical cleaning. They expressed frustration at having to make a separate appointment for that type of care, although in fact specialists may not actually know about basic health issues. DS parents indicated that if they could find a primary care pediatrician who specialized or had interest in DS, they would switch with little hesitation. But they were at a loss regarding how to go about finding such a doctor. One parent commented, “First and foremost, the best resource for a parent is to have a list of doctors that specialize in Down syndrome, because even when you go on the Web trying to find a physician, it doesn’t say, ‘I specialize in Down syndrome or I know a lot about Down syndrome.’” Partly because of this knowledge gap, and sometimes also because the primary care physician in question was also the physician for their other children, many parents stayed with providers who did not know much about DS. Consequently, as one parent said, “I have to walk our general practitioner through things. You know I come with this information . . . Please do this, please do the work for me, please have this test run. And . . . that’s very awkward. And they don’t like to be challenged that way.” Here, ideals for active healthcare consumerism clashed with practitioner ideals regarding patient power. The pressure to stay on top of everything is made worse by the fact that parents feel that they do not know all the right questions to ask to get the information they need. As one DS parent explained, using metaphors quite typical: You just want to make sure you’re doing everything you can do, because it’s like walking into a foreign country and not knowing the language. You only know what people tell you or if you pick up the right book . . . It’s like the shuttle landing on Mars and they land here [in one little spot] and they’re going to tell you what Mars is like, but really there’s this big thing of water right over here, but if you never get to it [you wouldn’t know]. It’s very similar to that.



Although empowered parents accept their care coordination role, they do so with some trepidation, concerned that if they overlook or are not aware of a needed test or assessment, their child will suffer. “I feel like the impetus for tests—‘Should we do this now?’—comes from me,” said one parent early in the interviews. “I’m not a doctor. I feel that I may miss something and it won’t get done.” Several months later, in her last interview, this parent reiterated that feeling with even more conviction: “One of the most important things is that I can’t really abdicate responsibility to still be the overseer of her health care . . . I still need to be relatively organized and think ahead and make sure that all the tests are getting done.” DS parents also cited the need for better, more coordinated communication among doctors, residents, fellows, and interns, and noted their frustration at having to answer the same set of questions over and over. “I understand they’re a teaching hospital, but she’s a frequent flyer,” explained one of the mothers. “With every student or resident, I’m telling them the same story all the time . . . Look it up or bring them all in at the same time, so I don’t have to keep repeating myself.” The clubfoot clinic was host to many trainees, and parents there had similar experiences. A system not set up for chronic care does not have the subsystems in place to accomplish such crosswalk communications. More important perhaps was the frustration over conflicting information given by the various clinicians. A DS parent provided an example, saying, “I have one resident telling me it’s a small hole [in her heart], another resident telling me it’s a medium-sized hole, another one telling me it’s a large hole, the other one telling me, ‘Don’t worry about it, she’ll be fine, she’ll outgrow it.’” Like the parent who mentioned Mars, many parents noted the need for some kind of map or guide to the territory. One parent said that it would have been useful in the early days to have “a one-two-three step thing” to guide her at different time points. She recalled, “I was at four or five months and, like, ‘What do I do now?’” Parents often provided one another with such guidance, sometimes through advocacy groups they joined or participated in. In addition to general information about the health system, specific strategies for getting the most out of the system were shared. One parent recalled an important strategic lesson she learned from talking to other parents: “I would have never known that if you put Down syndrome as a diagnosis for OT/PT, it’s not going to get covered. I would have never known that. But knowing ahead of time that I need to put in low tone or prematurity, things like that that will actually get covered, I already have a heads up.”

Stigma Management In addition to the instrumental work of care coordination, there is extensive expressive (symbolic, emotional) work required in parenting a child with a disability. In the model (Figure 11.1), this is identified as stigma management, and



it entails both culture work and social work. Culture work generally uses existing cultural frames or ideals to shed a positive light on a child’s condition. Social work shores up social relations, which can, especially with conditions like DS, be tremendously stressful. It also builds new social networks and finds new individuals to fill support and friendship roles. The DS parents generally tried to reframe DS in positive terms, and they learned from one another some ways to do it. Commenting on how much better she felt after talking to another parent of a child with DS a few weeks after coming home from the hospital with her own DS baby, one interviewee said, “She just talked about her own experiences. . . . She made it seem not so bad.” Many DS parents compared their experience to that of someone who’d planned a holiday in one place and ended up in another. The trip was different from what was expected, but joyous nonetheless. As noted earlier, this motif (Kingsley 1987) is stock in most DS support media. Original refigurations are not easy to create. Parents are in a complicated psychocultural bind in which love of and hope for their children compete with negative cultural views of the children’s conditions—views shaped by U.S. ideals regarding physical and mental perfection, individual accomplishment, social adulthood, and so forth (see Table 11.1). These negative views (internalized to a greater or lesser extent by different parents) both fuel biomedicine’s curative stance and compete with more positive disability rights movement and generic Judeo-Christian views about the value of every individual. The same challenging bind exists with clubfoot and, it would seem, with all special healthcare conditions, at least as they are experienced in the present U.S. context. One strategy parents of children with DS used to deal with this issue involved framing their experiences as transformational opportunities to become better people through devoted parenting. They also deployed religious

TA BLE 11.1

Competing cultural frames or ideals On the one hand . . .

On the other . . .

Adherence; Doctor knows best

Active health care consumer

Independence for social adulthood


Single ideal for physical and mental perfection

Diversity, individuality

Cure, intervention

Care, non-intervention

Source: Adapted from Sobo, E. J. (2007), “Mastering the Health Care System for Children with Special Health Care Needs,” In: Sobo, E. J. and P. Kurtin, eds. Optimizing Care for Young Children with Special Health Care Needs: Knowledge and Strategies for Navigating the System, pp.209–234. Baltimore: Paul H. Brookes Publishing. Used with permission.



imagery, for example, calling a child with DS “a gift from God.” Disability rights rhetoric promoting the value of physical diversity also is used in this way. The cultural practice of labeling disabled children as exceptional and special draws strength here. Parents of children with clubfoot (which, in contrast to DS, is relatively modifiable) took a different tack. On entering the clinic, new parents were told about famous athletes born with clubfoot. When one baby broke his cast before it was fully dry by flexing too much after leaving the clinic, staff congratulated him for this and celebrated his physical vigor. Parents learned to tap into allAmerican athletic imagery. For instance, on seeing the Dennis-Browne splint that her baby would wear for several years after casting (see Figure 11.2), one mother at the clubfoot clinic said that it looked to her like a snowboard. From then on, that was what the clinic staff called it too: Children did not get splints, they got “snowboards.” Activating the image of a healthy, athletic, snowboarding child diminished the splint’s potential to convey negative connotations (e.g., disability, ill-health, inactivity). This type of imaging offers protection against stigma. It also protects against the fatigue that the social work of educating others about disability can entail. To circumnavigate this, parents of children with clubfoot generally did not label their children as having clubfoot as such. They learned to say things such as

FIGUR E 11.2 Clubfoot

“snowboard.” Source: Photo by E. J. Sobo; previously published in Sobo and Kurtin (2007).



“Johnny’s feet need a bit of straightening.” In this declarative way, questions were deflected and potential Dickensian imagery bypassed. In general, but not without exception, DS parents had a more difficult time with stigma. They offered many examples of having to cope with ignorant, panicked reactions to their children. These sometimes entailed rifts within the family due to attributions of blame, which took a huge amount of social work to handle. The parents made it clear that they had enough to cope with without having to help everyone else cope too.

Implications: When Geography Trumps History In juxtaposing the experiences of two groups of parents of exceptional children, commonalities emerged concerning the tasks of (a) initial classification, (b) care coordination, and (c) stigma management. The patterns identified seem to be present in all SHCN categories, albeit to a greater or lesser degree depending on the particular condition in question and the context in which it is experienced. Specific clinically relevant recommendations based on these findings have been described in detail elsewhere (e.g., Sobo and Kurtin 2007; Prussing et al. 2004). They include supporting the acculturative process that those new to CSHCN world generally go through. As anticipated, the territory mapped by participants in some ways resembles the landscape described by social scientists who have previously theorized chronic health-related ills, as Sue Estroff did in “Outline of Chronicity” (1993: 274–277) and Gay Becker (1994) did in regard to the cultural construction of historical “continuity” in the face of a “disruptive” diagnosis. It is similar, for example, in terms of Estroff’s political–economic emphasis on chronicity as a growth industry. It is similar, too, in that participants made great use of metaphors for “locating new meaning when life must be reorganized” (Becker 1994). But it also differs. Times have changed. In contemporary society, many once-concrete categories and assumptions have been thrown open to question. “Tolerance” of “diversity” is increasingly touted. And, although it does not mitigate the sting of, say, infertility among those who desire to coproduce children (see Becker 1994), the myth of a particularly ordered life course unfolding in preset stages (e.g., love, marriage, baby carriage; a gold watch at retirement) no longer holds sway even for those who may once have subscribed to it. Within a given stage, there are numerous options. Seasonal and diurnal rhythms have been disrupted, too, as time-measured distances between societies are collapsed. As Kevin Birth (2007) has shown in regard to globalization’s impact on the health of those who stay up in their night to service us in our day, the world is indeed quite flat. Connectivity is not, of course, limited to talking to people otherwise far away; major portions of some populations live in one nation or state but have a home in another. Adaptation and acculturation in new locations is increasingly part of the fabric



of contemporary life. And of course television has broadened all people’s knowledge of the multiplicity of lifeways. Accordingly, geo-spatial metaphors provide a handy way to frame divergence. For instance, if we do not want to talk about something, we may say that we are not “going there.” If we do not understand something, we may say that we are “not there yet.” When we cannot connect socially with a person, we speak of him or her as occupying “another world.” Likewise, the key metaphor invoked by parents seeking to optimize CSHCN services focused not on time but place or space. As noted, this is an easily available metaphor in the present-day United States. Its appeal lies also in the very real spatiality of the healthcare systems to be navigated; actual distances must be traversed and locations conjoined. The corporeality of a child’s condition and the concurrent need to get to know or chart that child’s unique body also come into play in supporting the metaphor’s utility. Another difference between the present findings and those mentioned earlier is that the need to distinguish “real” dysfunction or disease (e.g., as discussed by Estroff) does not come into play. The fact that children are not considered in the United States as directly productive undergirds this inattention. They (and their families) are not ordinarily challenged as to the authenticity of their suffering, as are many adults embroiled in chronicity today (e.g., those living with chronic pain). Related to the fact that the role expectations disrupted for children are quite different to those disrupted for adults, rather than “continuity,” which is what Becker’s diagnostically disrupted adults seemed to seek, the parents affected seek a more tangible form of coherence (Antonovsky 1979). Indeed, the metaphorical balance for participants was more heavily weighted toward discovering and charting a new and navigable geography, rather than developing a continuous historical thread. In the context of concerns about optimizing care, geography trumps history and space trumps time. Parents spoke of creating a guidebook, or using a cartographer’s or explorer’s (or even astronaut’s) viewpoint, to build (sometimes as if putting together a puzzle) a knowable, navigable map of the healthcare system’s terrain. Different sectors need to be coordinated or made to cohere in the present moment rather than being stringed on the rope of time. So on top of coming to know their new geography, parents seek to develop the skills it will take to navigate this terrain successfully. This included learning the rules of the system or game, and gaining competencies in care coordination and stigma management skills. This is not to claim that geo-spatial metaphors were the only ones referenced. The literature on metaphor and meaning soundly demonstrates the context-specific nature of how available metaphors are drawn upon and deployed. The goal of the parents is none other than the well-documented goal of all users of metaphors and narratives (i.e., meaning making). Nonetheless, the strategy for recapturing meaning that received the most constant attention was a focus on space, not time. Parents’ life courses have been redirected rather than



suspended or truncated. They have been spatially dislocated; their path has diverged. They seek to reconstitute themselves within the new landscape, and to equip themselves as best they can to travel around in it. In many cases, the journey will be unending. But to make the most of it, the parents said, it would be best to have a map in hand. NOTES

1. Death and dying entails additional layers of complications that this chapter and the model proposed, as well as the book as a whole, do not attempt to address; also, whole-family issues are beyond the chapter’s scope (but see Landsman and Van Riper 2007). 2. The interviews discussed in this chapter were discussed previously, although to different ends (Sobo and Kurtin 2007). Figure 11.2 is reprinted here from Sobo and Kurtin (2007) with the kind permission of Brookes Publishing Co.; Table 11.1 and Figure 11.1 are adapted, also with permission, from Sobo and Kurtin (2007). 3. See (last accessed March 12, 2009). 4. By the 1990s, some saw that the diagnostic indeterminacy accommodated in the consequences-based approach still excluded some children: those at risk for experiencing a SHCN condition (e.g., impoverished children and those experiencing foster care or living in substandard housing). With the American Academy of Pediatrics, the MCHB issued an official definition in 1998 that does include such children. This definition, key to health care, financial, educational, housing, and other entitlements due to its governmental status, includes all children (a) “who have or are at risk for chronic physical, developmental, behavioral or emotional conditions” and (b) “who also require health and related services of a type or amount beyond that required by children generally” (Mcpherson et al. 1998). 5. This project, “Barriers to Care for Chronically Ill Vulnerable Children,” was funded by the Agency for Healthcare Research and Quality (R03 HS 013058). The principal investigator was Michael Seid. In addition to Seid and Sobo, Leticia Reyes Gelhard and Gabriela Hussong worked on the project. 6. This project, funded by Ruth and Sol Gerber and led by Sobo, focused at first on the use of complementary and alternative medicine for children with Down syndrome (Walker et al. 2003). The project subsequently evolved to be more concerned with coping, specifically in terms of dealing with an initial diagnosis, coordination of care, and stigma management (Prussing et al. 2004, 2005). Elizabeth Walker and Erica Prussing were key project staff. (See the cited works by Prussing regarding the sample, which was about two-thirds white and heavily female.) Initially, we conducted a series of five in-depth interviews with mothers from each of these families over the course of six months (October 2003 to April 2004). The resulting twenty interviews, like the thirty one-time interviews with parents of children living with Down syndrome, were audiotaped with the participants’ permission and lasted on average about 1.5 hours.

12 VVVVVVVVVVV Chronic Conditions, Health, and Well-Being in Global Contexts Occupational Therapy in Conversation with Critical Medical Anthropology G E LYA F R A N K , C A RO LY N B AU M , A N D M A RY L AW

Medical anthropologists know that our perspectives on chronic disease and

illness provide much-needed critiques of the hegemony of biomedicine and insights into clinical applications. But can we make our voices heard and influence action in places where it makes a difference? For several decades a crisis in academic jobs for social scientists has meant that interdisciplinary and interprofessional initiatives may define some of the most important opportunities in medical anthropology for years to come (Inhorn 2007c). Despite its phenomenal growth and success relative to anthropology overall, the subfield of medical

anthropology has not been immune from these challenging conditions. Medical anthropology has strong partnerships with public health, bioethics, and nursing. In this chapter, we sketch some foundations for a more concerted interface of medical anthropology with occupational therapy in scholarship, practice, and, importantly, professional developments. Occupational therapy is a practice profession founded in the United States in 1917. Its practitioners address health promotion, wellness and quality of life, rehabilitation, and function. The profession’s practice base in the United States has been mainly in medical and school settings, and a vibrant community practice has been emerging internationally, in tandem with World Health Organization (WHO) initiatives in human rights, disability studies, and progressive revisions in the International Classification of Function. Occupational therapy’s core approach is the use of everyday activities with people to improve or regain their capacity to participate in a meaningful and satisfying life. Historically, its scope of practice has been primarily with people who have chronic illnesses and disabilities—physical, cognitive, developmental, and psychiatric. The term occupation, in the context of the development of this field of practice, refers to engagement in life activities. It goes far beyond what some might think of as




work; it includes the activities necessary to care for self and others, productive activities related to paid or volunteer employment, school- and literacy-related activities, and social engagement in family and community life. Medical anthropologist Elisa Sobo (2004), writing on the interface between pediatric medical practice and children with special needs, has reflected that anthropologists generally see ”health” as a broad construct, consisting of physical, psychological, and social well-being, including role functionality. Occupational therapy’s definition is remarkably congruent. Based on the belief that all people need to engage in occupation in relation to survival, health, well-being, and life satisfaction, occupational therapy is a “profession whose focus is on enabling a person (i.e., individual client) or a group of persons (i.e., group, community, or an organization client) to access and participate in activities that are meaningful, purposeful, and relevant to their lives, roles, and sense of wellbeing” (American Occupational Therapy Association 2000: 3). In this chapter, we bring together medical anthropology (Frank) and occupational therapy (Baum and Law) and suggest how closer alignment can benefit the two professions. As argued elsewhere, medical anthropology and occupational therapy together with disability studies can produce and circulate more powerful discourses and practices to mitigate disempowering effects of chronic conditions on everyday life (Frank and Zemke 2008). People with disabilities and chronic conditions comprise perhaps 10 or 12 percent of the world’s population. Disability is linked disproportionately with poverty and social exclusion, a situation that is particularly acute in industrializing countries and struggling economies. Medical anthropologists have demonstrated how biomedical, political– economic, and demographic trends create specific configurations of dependency and needs for chronic care. Leaders in the profession of occupational therapy are acutely aware of the challenges of defining and providing services to enhance opportunities for people and families with chronic conditions to live meaningful, purposeful lives. Both professions focus on access to the range of opportunities and activities that people may expect to enjoy in their society. Medical anthropology typically takes a critical view of power differentials and cultural framings that produce structural inequalities, while occupational therapy typically intervenes at the level of individuals and their families. What would a profession look like if it were equipped with both approaches?

What Medical Anthropologists Need to Know about Occupational Therapy and Its Transformations: A Cultural History in North America Occupational therapy describes itself as working at the interface of the person and environment, to widen and enrich the dynamic space of meaningful activity that it calls “occupation.” A thumbnail ethnography of the occupational



therapy profession today, based on two of its flagship textbooks, shows that the profession’s own diagnostic and treatment categories are decidedly nonmedical (Crepeau et al. 2003; Christiansen 2007). Diagnosis and treatment aim to support and enhance the “occupational performance” of patients and clients. The profession focuses on returning, sustaining, or enhancing people’s participation in their expected or desired lifeworlds. The experience of disability or chronic conditions includes the client and family’s perspectives. Treatment is tailored to each individual’s unique needs and interests. It is client centered. Knowledge is organized, in the profession’s terminology, around the “intrinsic factors” that support performance and “extrinsic factors” that are grounded in social, cultural, and environmental context. From a medical anthropology perspective, this dichotomous tendency to view the mind-body as an organism (“intrinsic factors”) apart from culture (“extrinsic factors”) calls for closer critical analysis. The profession strives to reintegrate the relationship between the biological (individual) and social (environment) spheres. This is a place for a more informed conversation between occupational therapy and medical anthropology, at a moment when critical perspectives are moving to the forefront in both professions.

Occupational Therapy’s Pragmatist Heritage: Experience, Emergent Realities, Social Democracy Occupational therapy remains perhaps the sole practice profession that selfconsciously carries forward an intact pragmatist philosophy of action and experience (Breines 1986), and accordingly, its history and practice reflect a pervasive tension between holism and reductionism (Kielhofner and Burke 1977). Epistemologically, the tension plays out as the tendency of the profession to push up against biomedicine’s positivist science with constructivist and critical impulses (Denzin and Lincoln 2008). Philosopher John Dewey, at the University of Chicago from 1894 to 1904, and social ethicist Jane Addams, founder of the Hull House Settlement and eventual recipient of the Nobel Peace Prize, were the key pragmatists whose perspectives can be found in occupational therapy (Seigfried 1996, 2002; West 1989; Westbrook 1991). Dewey’s Chicago years were marked by a shift from pure academic philosophy to pedagogical practices. He founded the famous Laboratory or “Dewey School” at the University of Chicago in 1896 and aimed to engage the intrinsic interest of children in meaningful, developmentally relevant activities that would draw out their capacity to inquire more about the world and experience their “doing” as related to valued participation in the social world. His theories of progressive education, published originally in 1900, hinged crucially on his concept of occupation: “An occupation is active or motor; it finds expression through the physical organs—the eyes, hands, etc. But it also involves continual observation of materials, and continual planning and reflection, in order that



the practical or executive side may be successfully carried on” (Dewey 1990: 133). This definition, which underlies occupational therapy, exemplifies the mind– body holism, experimentalism, and open-ended adaptativeness of occupational therapy’s pragmatist orientation. Dewey’s pedagogy put his philosophy and politics in action (Dewey 1944). As philosopher and social critic Cornel West (1989) notes, the school was not only to serve as a model of how meaningful and enriching education could take place, but also to make a practical intervention into the national debate on education. This practical intervention was, for Dewey, a form of political activism in that the struggle over knowledge and over the means of its disposal was a struggle about power, about the conditions under which cultural capital (skills, knowledge, values) was produced, distributed, and consumed. In sharp contrast to curriculum-centered conservatives and child-centered romantics, Dewey advocated an interactive model of functionalistic education that combined autonomy with intelligent and flexible guidance, relevance with rigor and wonder. Clearly, the impulses of occupational therapy were shaped in networks and debates of the Progressive Era (1890–1920) about socialism, feminist theory, antimilitarism, mental hygiene, the arts and crafts movement, and the settlement movement (Boris 1986; Lears 1981; Zinn 2003; see also Breines 1986; Levine 1986; Quiroga 1995). Briefly, in 1908, Addams, Dewey, and others helped to found the Chicago School of Civics and Philanthropy, which held some of its courses at Hull House, and eventually became the University of Chicago’s graduate School of Social Service Administration. Another founder, Julia Lathrop, also a Hull House resident, served as the first woman commissioner of mental health in Illinois, and brought the Swiss psychiatrist Adolf Meyer, in his early career as neuropathologist at Kankakee, into the Hull House networks leading to successful reforms of the Illinois state mental institutions. Later, in 1908, Meyer invited Lathrop to help found the National Committee for Mental Hygiene and launch a national movement for mental health reform. In the same year, 1908, Lathrop collaborated with Reform rabbi Emil Hirsch to introduce the training course in “Invalid Occupations” for hospital attendants. Social worker Eleanor Clarke Slagle attended this first course in Invalid Occupations. Shortly after, in 1910, Adolf Meyer contacted Julia Lathrop to recommend an occupational therapist to work with him in his new position at the Johns Hopkins Medical School in Baltimore. She sent Slagle, who under Meyer developed a new form of occupation-based treatment called “habit training” (Loomis 1992). Slagle returned to Chicago and to Hull House in 1915 to establish the Henry B. Favill Memorial School of Occupations, under the auspices of the Illinois Mental Hygiene Society, the first professional school for occupational therapists (Breines 1986). In 1917, with colleagues from several professions, Slagle helped found the National Association for the Promotion of Occupational Therapy (later renamed the American Occupational Therapy Association), and immediately helped to broker the U.S. Surgeon General’s recruitment of



occupational therapists as “reconstruction aides” to help rehabilitate military personnel wounded in World War I. Slagle’s was the predominant influence on occupational therapy in the first half of the twentieth century: From 1923 through her retirement in 1942, however, Slagle was director of occupational therapy in the New York State Department of Mental Hygiene, where she amassed a staff of more than two hundred occupational therapists. Through most of this period, from 1923 through 1937, Slagle also served as executive director of the American Occupational Therapy Association (American Occupational Therapy Association 1967: 18). Meyer and Slagle’s habit-training belied the somewhat rigid sound of its name. The approach provided opportunities for patients with mental illness to engage in pleasurable, meaningful, and productive activities that were adjusted to the patient’s level of attention, emotional needs, and readiness for more complex challenges. The goal was to gradually move patients from long-term chronic care on backward to eventual community reintegration. In common with his friends and colleagues William James and John Dewey, Meyer viewed habit in daily life as an organizing substrate of life, one that focuses and regulates the use of energy, and also frees the individual for more creative encounters with reality (Christiansen 2007). Meyer advocated the use of natural rhythms of work, rest, and play as a means to awaken interest through occupations and hence promote more adaptive habits and life satisfaction (Meyer 1921/1983). He held the pragmatist’s optimistic view that even severe chronic symptoms could be ameliorated, even if not cured.

A Paradigm of Occupation—Tensions with Biomedicine Occupational therapy is not isomorphic with biomedicine largely because of its insistence on pragmatist understandings of experience and action. Hence, there has been an ongoing tension that has been characterized from within the profession as between holism (everyday experience) and reductionism (biomedicine) (Kielhofner and Burke 1977; Kielhofner 2004). Occupational therapists work with every known medical category of chronic condition—including AIDS, cerebral palsy, cognitive impairments, developmental disabilities, congestive heart failure, epilepsy, emphysema, head trauma, major depressive disorder, schizophrenia, sensory integrative disorders, stroke, rheumatoid arthritis, spina bifida, spinal cord injury, stroke, low vision, and more. Like every profession, occupational therapy has a distinctive way of framing problems, its own diagnostic categories, reasoning procedures, treatment goals, and methods of intervention (Abbott 1988). Occupational therapy focuses on the person, what the person wants and/or needs to do (“occupation”), and the environment in which a person lives, offering interventions to promote health and participation. On the one hand, occupational therapists work directly with patients to reduce incapacity due to impairment and to build skills. On the



other hand, practitioners understand that environments can be enabling or can present barriers to participation of those with chronic conditions and their families. Unquestionably, culture is crucial to definitions of “chronic condition,” “person,” “family,” “environment,” “participation,” and “barriers.” And power is essential to promote change. The alignment of occupational therapy in World War I with national agendas helped the profession expand but dampened the exuberant reformism of the Hull House phase. Alignment with the U.S. Surgeon General allowed for recruitment and training of hundreds of occupational therapists (“reconstruction aides”). The Surgeon General limited recruitment to young females, initiating a pattern of gender segregation and gender stratification in the profession with respect to the institutions of health care (yet although occupational therapists in United States are over 90 percent female, remarkably few feminist analyses have appeared in the professional literature; see Frank 1992; see also Pollard and Walsh 2000). In World War II, the military again expanded the employment and status of occupational therapists, but with greater reductionism in occupational therapy interventions for both physical and psychiatric conditions (Gritzer and Arluke 1985; Kielhofner and Burke 1977). Yet occupational therapy’s leaders managed to resist wholesale takeover by the new specialty of physical medicine (physiatry) and to continue to call for more holistic approaches (Colman 1992). The goal continues to be to promote health and wellness through meaningful activity— that is, through occupation. By the 1950s, in the civilian sector, occupational therapy’s pragmatist impulses were almost entirely subordinated to medicine, given the American medical profession’s rise to sovereignty by consolidating, in the analysis of sociologist Paul Starr (1982), cultural authority, control of the market, and backing of the state. Through the 1960s, the profession became an adjunct to medical treatment of chronic illnesses and disabilities, and its scope of practice and rationale were increasingly reshaped and truncated by scientific reductionism (Kielhofner and Burke 1977). As leaders in the profession complained, occupational therapy was in danger of losing its identity and becoming no more than a set of splintered treatments for discrete aspects of specific diagnoses. Likewise, the patient’s skills were in danger of being splintered. Occupational therapy sought to find its way back to its initial “paradigm of occupation” through the leadership of Mary Reilly. A former captain in the U.S. Army Medical Specialist Corps, and self-described “bricoleur,” Reilly provided intellectual firepower to change the profession from within, beginning with curriculum reform (Reilly 1958, 1969). Occupational therapy’s curriculum was then, as now, nationally accredited. Reilly argued the need to push back against medical dominance and to put occupational rather than medical knowledge at the core of the curriculum and to raise entry into the profession to master’s degree level.



The strategy of professional empowerment through control over curriculum was carried forward by Elizabeth J. Yerxa (1967, 1979, 1983) with faculty at the University of Southern California, resulting in the creation of a new doctoral degree program in 1989 in a new discipline called occupational science (Yerxa et al. 1990; see also Clark et al. 1997; Zemke and Clark 1996). Occupational science was, in this founding statement, “the study of the human as an occupational being including the need for and capacity to engage in and orchestrate daily occupations in the environment over the lifespan” (Yerxa et al. 1990: 6). The new discipline has spurred professional development and interdisciplinary research around a pragmatist core in North America, Australia, New Zealand, Scandinavia, the United Kingdom, Western Europe, South Africa, and countries in East Asia.

Occupational Therapy’s Encounters with Social Theory Social theory in occupational therapy could be better elaborated and examined through the lens of a critical medical anthropology (Scheper-Hughes 1994; Singer and Baer 1995). Like many practice professions seeking to add dimensions of experience and meaning in research, it turned at first to ostensibly value-free naturalistic methods such as ethnography and grounded theory. Importation of qualitative methods into occupational therapy was at first similarly atheoretical (Kielhofner 1981, 1982a, 1982b). How might occupational therapy research and practice look if building interventions in light of cultural theories? How might occupational therapy address Alzheimer’s disease as a marker of modernization’s effect on kinship and beliefs about personhood in India (Cohen 1998); shifting cultural constructions and political intersections of feminist theory, disability studies, and rehabilitation in the life of women with disabilities in the United States (Frank 2000); the impact of media representations, new technologies, and networks of care in China (Kohrman 2005); the moral ambiguity of biomedicine and family dilemmas posed as a result of medical technology at the end of life under late capitalism (Kaufman 2005); or the moral understanding of illness and debility produced through colonialism and industrialism in an African nation such as Botswana (Livingston 2005)? In the 1960s, Reilly reached out to mainstream mid-twentieth-century functionalist sociology to restore a social dimension to occupational therapy discourse, research, curriculum, and practice. The resulting approach or framework for knowledge, known as “occupational behavior,” offered a biologically informed model of human development wedded to the conservative role theory of Harvard sociologist Talcott Parsons. Despite the tendency of Parsonian sociology to reify the normal, and thereby delineate deviance, Reilly’s occupational behavior approach took an open and emergent view of the person–environment relationship by way of the metascience approach known as dynamic systems theory (Reilly 1974).



By the 1980s, scholarly development was urgently needed in occupational therapy in the academy. Departments throughout the country found themselves under threat of extinction unless they demonstrated fuller credibility, with doctoral-degreed, tenure-track faculty producing research in high-impact peerreviewed journals. Similar pressures were affecting the much larger, better recognized, and more fully funded profession of nursing (Corbin and Strauss 1988), and in an impressive phenomenology of nursing knowledge and expert practice (Benner 1984). Both nursing and occupational therapy were facing up to the residue of prejudices in Western culture and in the academy against knowledge and practices associated with manual activity and female-gendered work (Frank 1992; Rose 1986). The American Occupational Therapy Foundation (AOTF) initiated and funded a participatory action research project, the Boston Clinical Reasoning Study. The resulting publications included the books Healing Dramas and Clinical Plots: The Narrative Structure of Experience (Mattingly 1998) and Clinical Reasoning: Forms of Inquiry in a Therapeutic Practice (Mattingly and Fleming 1994). The project built upon research on practical reasoning by Mattingly’s mentor Donald Schön (1983). The parallels between Benner’s and Mattingly’s projects are instructive about the material production of the two female-gendered professions in the mid-1980s and their ethnographic approaches and elite theories of the action and the social world to effectively disclose the rich dimensionality of their practice. Medical anthropologists need to give much more careful scrutiny to occupational therapy practice in Mattingly’s (1998) study of clinical practice, which has contributed the much-cited concept of narrative emplotment—that is, the anticipation of future storied outcomes through meaningful action in a figured world. Occupational therapy provided a particularly strong venue for observing emplotment because of the profession’s pragmatist orientation toward experience, time, and action. A body of work by occupational therapist and medical anthropologist Juli Evans McGruder, begun in the 1990s, aimed to inform culturally sensitive and antiracist practice related to mental health in the United States and in Zanzibar (Evans 1992a, 1992b, 1992c; McGruder 2003, 2004a, 2004b; Cena et al. 2002). Her publishing reveals a very different style of reporting in occupational therapy and theoretical depth anthropology, suggesting that the two disciplines were not reading each other’s work. Occupational therapist and anthropologist Virginia Dickie focused on women’s craft production and the anthropology work as it related to well-being (cf. Dickie and Frank 1996; Frank 1996a). Grounded theory, not ethnography, is unquestionably the most widely used of all the qualitative methods in the practice professions such as nursing, education, and occupational therapy. Both grounded theory methods and social justice inquiry fit pragmatist emphases on process, change, and probabilistic outcomes. The pragmatist conception of emergence recognizes that the reality of the present differs from the past from which it develops. With respect to



occupational therapy research using grounded theory, it is crucial that a deeper engagement with critical approaches and social theory move analyses beyond the initial discovery of grounded categories and basic social processes (Frank 1997). Ethnographic approaches should add not only greater theoretical acuity to occupational therapy studies, but also a more powerful appreciation of context—that is, how environments are shaped by physical, geographical, social, cultural, political, ethno-racial, gender, economic, and class-based systems of enablement and oppression. Despite the door opening to ethnographic and narrative approaches, the viability of occupational therapy departments in the academy in the United States is increasingly linked to funding from the National Institutes for Health (NIH), National Institute for Disability and Rehabilitation Research (NIDRR), and the Centers for Disease Control (CDC). Major federal funders mainly have supported positivist-oriented, interdisciplinary team-based research (e.g., Baranek et al. 2008, Cascio et al. 2008), with a preference for randomized clinical trials ( Clark et al. 1997, 2001). The specific contributions of occupational therapy researchers may not always be identifiable when presented within a rehabilitation paradigm (cf. Ottenbacher et al. 2008, 2009 ). However, the long-running Boundary Crossing Grant, funded by the National Institute of Child Health and Human Development, an NIH agency, is an ethnographic study based solely in an interpretative approach, reporting on the relationships of African American mothers and their children with chronic illnesses and disabilities with professional care providers. The study illuminates the narrative construction of family experiences and how common themes permit families and caregivers to “partner up” to support the children’s participation and functioning in daily life (Lawlor 2003, 2009; Lawlor and Mattingly 2009; Mattingly 2003, 2006; Mattingly and Lawlor 2001).

Occupational Therapy, Disability Studies, Critical Medical Anthropology Occupational therapy goals are similar in principle to those first articulated by Disability Studies Movement and Independent Living Movement activists in the 1970s (Frieden and Spencer 1985). Disability activists proposed a critical “independent living paradigm” to counter the prevailing “rehabilitation paradigm” (deJong 1979; see also Crewe and Zola 1983; Scotch 1984/2001; Charlton 2000). Disability studies activists gained passage of the Rehabilitation Act of 1973 and later the Americans with Disabilities Act of 1991. The movements gave rise to the interdisciplinary field of disability studies with its cultural studies focus on the relationship between production and circulation of media representations and power (cf. Davis 2006). Disability studies has recently added a critical dimension to occupational therapy perspectives on the use of assistive technology, social construction of disability, and the effect of resource distribution on participation (e.g., Hammel and Finlayson 2003a, 2003b; Nepveux 2006).



The discourse on environmental constraints lends itself to occupational therapy’s core pragmatist concerns with democratic participation (Law et al. 2007; McManus et al. 2006; Mihaylov et al. 2004; Welsh et al. 2006). Occupational therapists have been able to make use of ecological models that are widely shared across health professions internationally (Hancock and Perkins 1985). Critical medical anthropology and disability studies scholarship can deepen the usefulness of such models, however, by illuminating the differential effects of power through Foucauldian, late Marxist, feminist analyses (cf. Scheper-Hughes 1994, 1987; Rose 2007; Levin and Browner 2005). The intersection of critical medical anthropology, disability studies, bioethics, and feminist theory is already a leading area where occupational therapy work in neonatology, developmental care, community programming for adults with autism, and sensory integrative therapy can complement and develop anthropological insights (Landsman 2003, 2004; Landsman and Van Riper 2007; Ginsburg and Rapp 1995). Medical anthropologist and disability studies scholar Devva Kasnitz discusses how rapprochement might be further achieved (2008; also see Kasnitz 2001, and Kasnitz and Shuttleworth 2001). Citing Shakespeare’s (2006) and Thomas’s (2007) work, Kasnitz suggests that disability scholarship has gone too far in rejecting all impairment-based descriptors and approaches. When the agenda is healthcare policy, according to their views, the polarization of medical model versus social model of disability is faulty and does a disservice to the potential well-being of some people with chronic conditions. With others, they call for a “sociology of impairment” as well as of disability (Hughes and Paterson 1997). Kasnitz’s move opens a new and potentially productive conversation between occupational therapy, critical medical anthropology, and disability studies.

The Social Production of Health in Global North and South: Occupational Therapy in World Perspective World systems and dependency theories help to explain the history, distribution of occupational therapy, and its patterns of practice internationally, as elaborated in a fuller analysis by Frank and Zemke (2008; also Block, Frank et al. 2008). Most occupational therapists practice in the United States and Europe, according to World Federation of Occupational Therapists statistics on membership in national associations. American and British influences after the First and Second World Wars fueled the expansion and influence of occupational therapy profession internationally, which was exported as an “allied health” component of biomedicine and rehabilitation (see also Wilcock 2001). At the present moment, however, a critically informed international movement has emerged to promote practice with populations ignored or actively oppressed by mainstream institutions. The Occupational Therapy without Borders movement and its networks of colleagues operate within mainstream institutions, but also—and perhaps mainly—outside conventional healthcare



systems (Watson and Swartz 2004; Kronenberg and Pollard 2005). They often collaborate with NGOs and local partners using microcredits and other mechanisms to create viable and sustainable economic and social development projects. Adding a sharp political analysis otherwise absent from the discipline and thrust of occupational science and other mainstream academic approaches in occupational therapy, the Occupational Therapy without Borders work concerns itself with the problem originating with the inception of the WHO definition of health in 1946, and discussed cogently by critical medical anthropologists Betty Wolder Levin and Carole Browner (2005)—that is, how to conceptualize “health” as well-being in the positive sense, not merely as the absence of disease or infirmity. In this way, occupational therapy practice is reaching beyond the clinic and even the basically medical model of Community Based Rehabilitation (CBR), with its focus on the individual, promoted by the United Nations since the 1980s. The relative power of the profession in the United States to disseminate knowledge and practice calls for coherent critical analyses. But it will not be enough to focus on environmental barriers affecting specific populations and interventions, no matter how well-guided by disability studies and other social justice concerns (e.g. Block, Ricafrente-Biazon, et al. 2005; Block and Rodriguez 2008). We must now also focus on the chronic conditions that afflict the profession, as occupational therapists strive to improve the quality of life for individuals, families, and communities in both the Global North and Global South. Children and older adults tend to be considered the most vulnerable sectors of any population, and together consume most healthcare resources in the Global North. Nearly a third of occupational therapy practitioners in the United States work with adults age sixty-five years or older (29.6 percent) (American Occupational Therapy Association 2000: 11). Yet there is a critical shortage of occupational therapists to address problems of people of all ages living with chronic illnesses and disabilities. The U.S. Department of Labor, Bureau of Labor Statistics, predicted a 27 percent surge in jobs for occupational therapists in the United States for the decade 2004-2014, a trend driven by biomedical, functional, and social structural challenges of aging ( ocos078.htm, accessed 11/14/09). Meanwhile, the absolute numbers of older adults is growing worldwide, which will likely increase their contact with occupational therapists. The number of older adults will increase from 6.9 percent to 12 percent—that is, from 550 million to 973 million people worldwide (Kinsella and Velkoff 2001). Further, it is the developing countries of the Global South that now are rapidly going through the “demographic transition” in which the aging population is occupying an ever greater proportion of the total population. At the same time we are seeing a change in the causes of death with a shift from infectious disease and acute illness to chronic and degenerative conditions. Thus the burden of care of sick and disabled older adults in these countries—many of which lack a



well-developed state-supported social welfare infrastructure or system of medical care—will fall on families with decreasing numbers of younger people available to provide resources and care. There is a great need to manage chronic health conditions so that a people can age “in place” with dignity and make contributions to their families and their communities. In the United States we refer to “independent living,” but we understand that “interdependent living” may be a more experience-near concept. Occupational therapy’s response is to promote the integration of healthy practices into everyday life—while realizing that the conditions to do so are often controlled by forces and entities other than the individuals, families, and communities affected. Nearly 80 percent of all persons over sixty-five in the country have at least one chronic health condition and 50 percent have at least two (National Center for Chronic Disease Prevention 1999). While the majority of older adults are healthy and managing their everyday life activities, others face limitations that lead to social isolation and activity restriction. As people age, they accumulate life experiences and their occupational histories grow and diversify, with likes and dislikes, along with customs and expectations from their respective cultures and societies affecting how they respond to help to remain active (Law 2002). The biological changes inherent in the aging process create challenges, yet many older adults have a tremendous amount of reserve capacity as evidenced by the large number of active octogenarians in our society today. For many, age-dependent changes are not sufficient to produce difficulties in everyday performance (Hooyman and Kiyak 2005). If occupational therapists are able to help older adults compensate for, adapt to, and accommodate to limitations that stem from biological changes it becomes a major resource to families, and particularly to women, as most of the care of vulnerable populations is provided by the family and other informal caregivers, typically female. In addition to so-called “normal aging,” our society today is challenged with the increasing prevalence of chronic illnesses in older adults, including type 2 diabetes, hypertension, stroke, cancer, and heart disease (Moody 2002). Although these illnesses have a genetic component, they are known to stem largely from unhealthy lifestyle patterns and choices (Rowe and Kahn 1997). Such behaviors are related to the absence of meaningful occupation (i.e., living a sedentary lifestyle) or the engagement in potentially harmful occupations (i.e., smoking, overeating). Therefore, in addition to the necessity for older adults to do something, it is essential for them to choose what they do wisely, on the basis of long-term health-related outcomes, to ensure maximum quality of life as they age (Foster et al., forthcoming). Scarcely any attention is paid except by occupational therapists to the question of the specific needs of people aging who already have chronic conditions and disabilities. If we look to practical, multidimensional models of “successful aging,” such as Rowe and Kahn’s (1997), performing occupations helps in three key



components: (a) the avoidance of disease and disability, (b) the maintenance of cognitive and physical capacity, and (c) active engagement with life. Crowther and colleagues (2002) expand the model to include spirituality, a phenomenon that requires occupational therapists to understand not only the unique needs and thoughts of individuals and the meanings they attach to their occupations, but also an appreciation of dynamic local traditions, meaningful venues for action, and local knowledge. We are finding that healthful occupations serve a preventative function against age-related illnesses that result in long-term disability (Everard et al. 2000; Law 2002; Rowe and Kahn 1997). This engagement can reduce the burden of care on families, communities, and our nation’s institutions when people’s functional capacity begins to decline—and also create opportunities for occupational therapists to work both in healthcare and community facilities. At the same time, our goal should be to keep people out of institutions unless absolutely necessary, and to humanize institutional and especially nursing home care. Occupational therapists are being called on to bridge between medical and community care. The advances in technology (smart home monitoring, robotics, assistive technology, and even programmed electrical stimulation to support muscle movement) is making it possible for persons with cognitive and mobility limitations to live independently. Occupational therapists will interact with engineers, designers, and architects to enable environments that remove barriers that threaten the independence and health of persons with disabilities. There is also an important role for occupational therapists to partner with employers to prevent work-related injuries and illness, transition injured workers back to work, and support the needs of workers with disabilities. Let us turn to the situation of children. Most children with chronic conditions and disability live in communities rather than institutions. The prevalence of childhood disability and limitations to participation in daily activities has been found to be 6.5 percent in the United States (Newacheck and Halfon 1998), 4.2 percent in Canada (Statistics Canada 2002), and 4.6 percent in Australia (Bradbury et al. 2000). Children are dependent—by definition. Children with disabilities, however, tend to have less control over their day-to-day activities than children without disabilities. Their participation in everyday activities differs and reflects more time spent in self-care and passive activities within their home environment (Brown and Gordon 1987; Law et al. 1999). Environmental barriers in home, community, education, and policy prevent children with disabilities from developing satisfying patterns of social participation (Law et al. 2007). The situation is exacerbated by the tendency of parents, teachers, medical personnel, and policy makers to make decisions for children with disabilities at ages when their peers without disabilities have more autonomy and control (Law et al. 1999). Canadian occupational therapists working within the Canadian single-payer universal healthcare system experience more freedom to spend time in community settings working with families on issues of social participation than their



counterparts in the United States. Until recently, however, the primary focus of children’s treatment centers in Canada and other developed countries has been to ameliorate the effects of disability by changing the child’s skills to facilitate normal development. There was little consideration of the rights of children and integration into community life—perspectives introduced by the independent living and disability studies movements (Gliedman and Roth 1980). The built environment, production of space, increased classification, the perception of disability as deviance, and distribution of power create disabling environments. The separation of private and public space—and decreased political influence of the home and families—are mirrored in city planning, gated communities, inner cities, and in workplaces, households, schools, shopping districts, and transportation networks. How has society created environments that are so stubbornly restrictive for children with chronic conditions and disabilities? A Foucauldian (1973, 1975) perspective on the diffuse technologies of biopower helps to explain why barriers are so pervasive and resistant to change. Research in occupational therapy from this perspective shows that design limitations are only a manifestation of disabling regimes of knowledge (discourses) that begin with measurement of surface characteristics, lead to categorical and statistical norms, and end with marginalizing “difference” (Law et al. 1999). Naming the historical roots of power, the relationship between power and knowledge, and the institutionalization of quantifiable classifications in society are not part of occupational therapy’s working vocabulary and techniques. But they do govern the conditions in which practice takes place. Families speak about being forced to live in “two worlds”—a world of “normality” and a world of “disability,” while in reality they and their child’s occupational therapists experience the child’s abilities on a continuum (Law et al. 1999). Speaking realistically, the North American sector of the profession must deliver science-driven responses that hold up empirically—for example, in rehabilitation medicine where neuroscience theories and emerging technologies for brain imaging are having a powerful impact on the construction of knowledge and on patient outcomes (Dumit 2004; Rose 2007). We state these questions in the ordinary language of North American occupational therapists’ concerns— with the expectation that dialogues with medical anthropology (and especially a critical medical anthropology) may alter their everyday clinical framing and focus (cf. Ong and Collier 2005). Occupational therapy seeks to: ■

Understand the role of sensory, motor, cognitive, psychological, and physiological mechanisms on the development of skills and abilities that support daily life and how these mechanisms change with health conditions, injury, maturation, and/or aging.

Determine the impact of biological and environmental factors on activity performance and participation in daily life.

244 ■


Develop means of measuring cognitive, physiological, neuro-behavioral, and psychological capacities of individuals as they engage in tasks necessary to support daily life.

Develop measures that are sensitive to learning, behavioral, or compensatory strategies that support recovery, adaptation, and environmental interactions.

Develop, apply, and evaluate personal, environmental, and activity-specific interventions to promote health, rehabilitate function, and prevent secondary conditions that threaten an individual’s independence and quality of life.

Determine the efficacy of interventions that contribute to optimal development, recovery, prevention, and compensatory strategies for older adults.

World Anthropologies, World Occupational Therapies Some occupational therapy clinician-scholars are attempting to reconfigure North American concepts, theory, and practice in non-Western settings (e.g., Minato and Zemke 2004a, 2004b; Zemke 2004). Japan ranks second in the number of occupational therapists and its practice reflects the influence of the United States. The Japanese Ministry of Health and Welfare established the first occupational therapy school in 1963 with a teaching staff mostly of occupational therapists from the United States (Japan Association of Occupational Therapy, Michael Iwama (2005), Tomoko Kondo (2004), and Etsuko Odawara (2005), who received their doctorates in North American programs, have been attempting to develop more culturally sensitive treatment models in Japan. Their efforts parallel the new literature by anthropologists attempting to foreground culture-near concepts about culture in Japan (Yamashita 2006). And these efforts, in turn, contribute to the emerging articulation of world anthropologies (Ribeiro and Escobar 2006) and world medical anthropologies (Saillant and Genest 2007; Baer et al. 2004). We must ask why these Japanese anthropologists and Japanese occupational therapists are not in conversation with one another working on topics like aging and senility in Japan. Medical anthropologist have indeed been producing work on daily occupation, the culturally mediated experience of the body and bodily performance, and function and performance “in place” over the life span in Japan (Traphagan 2000, 2002, 2003, 2004, 2008; also Yamamoto-Mitani and Wallhagen 2002). At present the medical anthropology literature is underrecognized and underutilized, despite the likelihood that it could help to counterbalance the hegemony of North American occupational therapy concepts and practices. There is pressing need in the Global South (and among resource-poor and disempowered communities elsewhere) for trained professionals to provide knowledge and interventions to improve opportunities for people with chronic illnesses, disabilities, and otherwise disrupted lives. The WHO (2004) has



redefined its approach to disability in terms of the right of all people to social participation with dignity. A broad, often radical movement focused on social justice publishes under the rubric Occupational Therapy without Borders (Kronenberg and Pollard 2005; Watson and Swartz 2004). New models of a critical social occupational therapy practice include collaborative models for social transformation, to address structural violence associated with neoliberalism and globalization and other inequities in development policies (cf. Galheigo 2005; Frank and Zemke 2008). Australian- and Canadian-based occupational therapists building on the liberatory potential of occupational science, propose a social justice agenda (Townsend and Wilcock 2004; Townsend and Whiteford 2005). Leaning on theories of social justice in law, philosophy, and politics, they carve out a distinctive meaning for the concept of “occupational justice.” In doing so, they extend a disability studies discourse of equal access and opportunities for people—not only with disabilities, but incarcerated populations, refugees in internment camps, marginalized classes, excluded ethno-racial groups, and those disadvantaged by gender—to engage in the range of meaningful, purposeful, valued, and rewarding activities (“occupations”) in their society. Much of this work takes an explicit political perspective: Simó Algado and Burgman (2005), for example, describe a project that mobilized and trained former teachers and families in Kosovo to facilitate expressive and increasingly joyful play activities for children emotionally traumatized or physically injured by war. Occupational therapists claim a radical political edge by working with populations oppressed related to their occupations in Europe, Latin America, Asia, and Southern Africa, so bringing it closer than ever to the conventional fields and interests of medical anthropology. Kronenberg and Pollard (2005) propose a heuristic of “political activities of daily living” (pADLs) for students and practitioners. The “pADL” shorthand is a send-up of the stock rationale for occupational therapy services under the rehabilitation paradigm—that is, assisting people with disabilities to take care of their daily basic biological and minimal self-care functions, known as activities of daily living (ADLs)—such as bathing, toileting, oral hygiene, and grooming. The small p serves as a playful reminder to occupational therapists to question therapeutic situations as to the hidden power dimensions that can result in disempowering outcomes. This shift to a political practice of occupational therapy informed by mainly left social theorists such as Marcuse, Foucault, Freire, Sen, Chomsky—and a host of occupational therapy theorists (mainly female)—moves the profession beyond advocacy toward participation in social transformation (Pollard et al. 2008). We find a parallel here with the conversation in anthropology about creating a more “public anthropology” and “reclaiming applied anthropology”— calling for the profession of anthropology to become more performative, more practice oriented, morally refocused, collaborative, and action oriented (RylkoBauer et al. 2006; Lassiter 2005; see also Field and Fox 2007).



With substantial contributions from occupational therapy consultants, the WHO has revised its view of disability and health. WHO’s International Classification of Function in disability and health was developed in the 1980s with a then cutting-edge disability studies model that distinguished among “impairment” (biological), “disability” (function), and “handicap” (social). The International Classification of Function (WHO 2001) now more broadly embraces goals of social participation with dignity, acknowledging that health is determined mainly by social, economic, and political conditions.

Conclusion Anthropology and occupational therapy meet once again, but at a new moment, where both professions are poised to deal with health in a global context from a critical standpoint. In calling for deeper conversations and more active institutional linkages we perhaps tread a pioneer path for other health professions that are inherently more interested in health and well-being than in elimination of disease. Yet medical anthropology is not a practice profession working directly with populations. It is an academic field. The American Occupational Therapy Association includes thirty-nine thousand members, a cohort three times the size of the American Anthropological Association. According to the U.S. Department of Labor, the number of occupational therapists is actually about a hundred and thirty thousand. Despite cyclical economic recessions, occupational therapists are in high demand and employment opportunities will continue to rise. In the sophisticated interdisciplinary academic environments in which occupational therapy must survive, stronger institutional ties are needed with medical anthropology, public health, disability studies, and other fields that can help to build social theory and critical standpoints affecting not only clinical encounters and lifeworlds of suffering, but the profession itself. An applied, clinical, and interpretative (constructivist) medical anthropology that is already in place should and must continue to explore and report on the lifeworlds and experience of patients and suffering. The value of a critical medical anthropology for occupational therapy will figure largely in contributing to the empowerment of the profession itself—and thereby its ability to help improve lives of people with chronic conditions. The question that occupational therapy should prompt critical medical anthropologists to ask is: Together what can we do?

VVVVVVVVVVV Afterword Chronicity—Time, Space, and Culture A RT H U R K L E I NM A N A N D R AC H E L H A L L- C L I F F O R D

A key health issue facing humanity today is the increasing burden of chronic

conditions. The year 2000 was the first in history in which people over sixty worldwide outnumbered children under five. The future is one in which chronic illnesses and end-of-life conditions faced by aging populations will play an ever-greater role in health care. Chronic illness is embedded in the local flow of moral experience, in the struggles of individuals to craft a moral life, and in the aspiration for ethical values that extend beyond a local world and that speak to questions of fairness, justice, doing good in the world, and the largely unmarked yet deeply pro-social value of caregiving. The developing world faces a double burden of high levels of acute, infectious diseases together with the increased incidence of chronic conditions. Eighty percent of all deaths from chronic disease occur in low- and middleincome countries (World Health Organization 2005b). Chronic conditions, it would seem, draw together the gap between developed and developing country status by affecting all contemporary human populations—uniting us in desires for improved prevention, treatment, and care. But the yawning gap between the rich and the poor within and among nations has not been narrowed in achieving these goals. While chronic conditions are often preventable or have good potential for therapeutic control, poor people and marginalized communities everywhere are far less likely to be the beneficiaries of primary care efforts focusing on prevention or consistent, effective therapeutic regimens. Medical anthropology has long had an interest in chronic conditions, often focusing on stigma, problems in professional health care, and the burden that conditions place on families. As the chapters in this volume illustrate, the methods and tools of medical anthropology are thus well suited to contribute to the understanding and treatment of chronic health conditions in low- and middleincome countries, and the chronic social, economic, and political conditions that shape people’s vulnerability to and management of disease. In order to




make a contribution to applied, programmatic efforts, chronic conditions must be examined for their impact on and by time, space, and culture. Chronicity draws attention to the fluctuations in disease and life circumstances over time and lifetimes. Chronic disease is distinctive because it does not end, but rather it becomes entangled in people’s work, families, and life stories. For patients and families, chronic diseases entail a radical restructuring of time. There can be no experience of cure, but at best of control, even though hope for the discovery of a cure often drives treatment-seeking. Lives are measured by periods of greater function and periods of greater frailty and infirmity. The shifting presence and absence of symptoms over time are given meaning based on personal actions, life circumstances, and social and religious beliefs. People with chronic conditions sometimes experience an altered sense of self, perceiving their life as one that is either functionally or definitively “time-limited” (Estroff 1993: 281). People with chronic conditions that impact everyday routines, functioning, and capability are forced to grapple with mortality and their human flaws as a part of their daily routines, in a far more visceral way than healthy individuals. Chronic conditions force changes in every aspect of existence, irrevocably changing everyday life for people through their various connections with each other. On a practical level, the families of people with chronic conditions must restructure their own timetables and family routine to accommodate care. The requirements and burdens of care range greatly, from the twice-daily administration of medications for epilepsy in a child to full-time caregiving for a parent living with Alzheimer’s disease. The time required to provide adequate care can be a tremendous emotional and financial burden, as many are forced to choose between the provision of care at home at the expense of time in formal employment and professional care alternatives (Kleinman 2008). For low-income families both in poor countries and in advanced economies, the burden of providing care can reduce household economic stability, unsettle family stability, and result in ostracism and inadequate care for the chronically ill. In rural China, for example, such health challenges are a leading cause of bankruptcy (Yu 2006). Much has been made in medical anthropology of the concept of the sick role—of illness as a role apart from the norm. The historical example of leper colonies and other more recent examples of institutionalization, isolation, and sequestration illustrate how the ill are often set apart spatially from the mainstream population, as fear of contagion and stigmatized conditions result in the physical expulsion of sufferers from the everyday life of their societies. Yet, we also see shifts in space with far more benign motivations and beneficial outcomes for those with chronic conditions. In industrialized settings, and increasingly in the developing world, legal codes protect the rights of the people with disabilities and provide individuals and groups with the traction to ensure guaranteed access to public spaces.



Domestic spaces are also and often dramatically restructured to accommodate the chronically ill. Worlds are structured around those who are chronically housebound not only to simplify the provision of care but also to reduce their loneliness and isolation. The physical requirements of care often trump social norms of privacy and personal space for both patients and caregivers, as people who are ill may be cared for and assisted with activities of daily living in public rooms of the home. Furniture is moved to accommodate medical equipment; sitting rooms for guests are rooms reallocated for living and sleeping for those who are ill, fragile, and with limited mobility. In China, for example, the ill person typically lives in the front of two rooms. Under normal circumstances, this front room is reserved for eating and socializing, and all family members sleep in the second, rear room of the home. The activities of the family as well as their physical space increasingly become centered around the person who is chronically ill and physically dependent on others, and they are given the space of honor and are set apart from the standard family living arrangements. This arrangement provides space for caregiving and ensures that the person who is ill remains integrated into family life as much as possible (Kleinman 1988a). Culture has the greatest impact on chronic diseases lived over a long period of time. Every aspect of life is affected, from diet and other routine tasks of care, to religious practices to relationships with others. But the most powerful influence of culture is on what is most at stake for patients and their caregivers. The narratives of people with chronic illness show just how inseparable symptoms and personal/interpersonal responses to them are from the mundaneness of everyday living and the memories and aspirations that make suffering livable. Culture comes to affect chronic illness and caregiving via particular things at stake in illness experience, embodied forms of criticism and resistance, help-seeking practices, self-care, and network care. It affects too interactions with professionals where local cultural commitments weigh heavily on caregiving. People living with chronic conditions must balance conceptions of their own autonomy with their dependence on doctors and other caregivers. While the ways in which they do so vary, this double bind of autonomy and dependence exists in all cultures. In the United States, the loss of power and control to doctors and other caregivers is minimized as much as possible; the mutuality of the patient–doctor relationship is continually negotiated. Yet, not infrequently, this is a pseudo-mutuality, with blame if conditions worsen while being selfmanaged, and criticism if the patient is seen as too passive. In contrast, in China there is an expectation that the doctor–patient relationship will be hierarchical and that the patient will be dependent on the doctor. Here the idea that one is responsible for self-care is less urgent, and passive acceptance of medical regimens is fostered.



Biomedicine is shaped by the cultures in which it is practiced. This is illustrated in variations in Euro-American and Asian ideas of terminality and their consequent impacts on organ donation for evidence of this reality (Lock 2004), or in variations on life expectancy as illustrated in chapters in this volume (e.g., Miles, Maynard). Treatment strategies and outcomes for individuals with chronic conditions vary considerably across household and national economies and available services. Yet, biomedicine carries with it a culture of its own (Kleinman and Benson 2006), and economic issues and certain institutional arrangements are similar wherever biomedicine is practiced. Finally, chronic illness is an example of the way sickness is embedded in local political economy, kinship structures, and social relationships. As indicated throughout this volume, chronic conditions are experienced in local social worlds and often involve interpersonal social suffering. Social suffering is an omnibus term that encapsulates the idea that the social aspects of a sickness are just as salient as its biological elements (Kleinman et al. 1997). It is not only patients who suffer from the social sequelae of chronic conditions; their families and other members of their social networks suffer as well. They face stigma associated with conditions that are feared or not well understood, and these have real social and economic consequences in people’s lives. The current programmatic structure of global health, and the efforts in research and development that follow, are configured to address acute conditions and the technologies that bring resolution. In contrast, there is inadequate attention to chronic conditions and chronicity. This deficit calls into question the vertical models of treatment and illustrates the need to integrate global health funding for chronic conditions in primary care settings. As is dramatically illustrated during periods of pandemic infectious disease outbreaks (Hien et al. 2004), such as SARS and the more recent outbreak of swine flu (H1N1 virus), global health is not just about low-income countries—it is shared across all societies. Chronic conditions and quality of care need to be included in our discourse and in our funding allocations in global health programming. While great progress has been made with HIV and tuberculosis, funding for other chronic conditions, those that cause some of the greatest losses to productivity and quality of life, such as depression, heart disease, and diabetes, have not received adequate attention. And not least of all, chronic conditions call quality of care into account. Global health has largely avoided quality in favor of access and availability. But better implementation does not necessarily mean higher quality. Sufferers with chronic conditions readily understand the importance of quality care. Attention to chronic illness should lead to greater concern with what quality means in health care, and how it can be evaluated and implemented. Chronicity also implies greater attention to rehabilitation and prevention of serious disability, as Frank and colleagues highlight in their chapter in this volume.



The focus on chronicity—of conditions, contexts, and circumstances—provides a framework to build a new agenda for global health that reimagines the role of health services and the role of communities in care. Chronicity makes it unavoidable that professional and family caregivers move to the center of our understanding of health care. This will require a cultural revolution in global health planning and program development.


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C A ROLY N BAUM , PhD, OTR/C, FAOTA is the Elias Michael Director and Profes-

sor of Occupational Therapy and Neurology at Washington University School of Medicine in St. Louis, MO. She is immediate Past President of the American Occupational Therapy Association. Her research focuses on the impact of cognitive impairment on daily life. Her edited books include: with Charles Christiansen, Occupational Therapy: Enabling Function and Well-Being, (1997), and with Mary Law and Winnie Dunn, Measuring Occupational Performance: Supporting Best Practice in Occupational Therapy, (2005). DA PHNA BIR ENBAUM-C A R MELI , PhD, is Associate Professor of Medical

Anthropology in the Department of Nursing at the University of Haifa, Israel. Studying women’s health in contexts of advanced medical technologies, her research focuses on procreative medicine. Birenbaum-Carmeli’s main field of enquiry is Israel, where she has investigated health policy, medical practice and consumers’ perceptions and behavior in matters of fertility treatments and reproductive choice. She is the author of Tel Aviv North: The Making of the New Israeli Middle Class (2000) and she is primary editor of Assisting Reproduction, Testing Genes: Global Encounters with New Biotechnologies (forthcoming) and Kin, Gene, Community: Reproductive Technology among Jewish Israelis (forthcoming). C A R L A R AYMONDA LEX AS M A RCHIR A , dr. SpKJ, a psychiatrist, is Lecturer in the

Department of Psychiatry, Faculty of Medicine, Gadjah Mada University, and Coordinator of Psychiatric Emergency Services in Sardjito General Hospital, Yogyakarta, Indonesia. In 2002–03, she was a Freeman fellow in the Department of Social Medicine, Harvard Medical School. In 2005, she participated in the International Mental Health Leadership Program in the Centre for International Mental Health, School of Population Health, University of Melbourne. In 2006, she was a WHO National Consultant for Mental Health for Indonesia (Yogyakarta Office), and led a rapid assessment of mental health following the massive earthquake in Yogyakarta. Currently, she directs the Yogyakarta site of the International Pilot Study of Onset of Schizophrenia.




STEV E FER ZACC A is Associate Professor of Anthropology, and chair of the

Department of Anthropology at the University of Lethbridge in Alberta, Canada. His research includes the ethnography of clinical encounters and the management of Type 2 diabetes in the United States and Indonesia. His study of medical pluralism in Indonesia, Healing the Modern in a Central Javanese City (2001), is an interpretive and phenomenological exploration of the relationship between medical practice, the health of modernity, and Javanese structures of experience. His current work is concerned with Javanese articulations of self, health, and emotivity, the affect of Indonesian urban life on gender relations, populist Islam and health, and the cultural logic of risk, sexuality, and the social life of youth in western Canadian resort towns. Steve is also editor of the journal Medical Anthropology: Cross-Cultural Studies in Health and Illness. GELYA FR ANK , PhD is Professor, Division of Occupational Science & Occupa-

tional Therapy at the School of Dentistry and Department of Anthropology, and Affiliated Faculty in the Center for Urban Education, University of Southern California. She is a Fellow of the Pacific Center for Health Policy and Ethics, and the Society for Applied Anthropology. Her books include: with L. L. Langness, Lives: An Anthropological Approach to Biography (1981), and Venus on Wheels: Two Decades of Dialogue on Disability, Biography and Being Female in America (2000). Dr. Frank is a former National Endowment for the Humanities Resident Scholar at the School for American Research, Santa Fe, New Mexico and Founding Co-chair, Occupational Therapy and Occupational Science Interdisciplinary Special Interest Group, National Association for the Practice of Anthropology. BY RON GOOD, Ph.D., is Professor of Medical Anthropology in the Department of

Global Health and Social Medicine, Harvard Medical School, and the Department of Anthropology, Harvard University, and a regular Visiting Professor in Gadjah Mada University, Yogyakarta, Indonesia. He is author of Medicine, Rationality and Experience: An Anthropological Perspective (1994), and editor of books on culture and depression, panic disorder, subjectivity, and “postcolonial disorders.” His current research focuses on early experiences of psychotic illness in Java, and on the development of mental health interventions in post-tsunami, post-conflict Aceh (Indonesia) and around Asia. His broader concerns focus on political, cultural and psychological theorization of subjectivity in contemporary societies. R ACHEL H A LL-CLIFFOR D, PhD, MPH, MSc, is Lecturer of Medical Anthropology

in the Department of Anthropology at Boston University. Working at the intersection of medical anthropology and international public health, her research focuses on neglected diseases and their interplay with poverty and traditional gender roles in the developing world. Her current research examines the longterm impacts of oral rehydration therapy campaigns to address chronic diarrhea in highland Guatemala.



ZELEE HILL is a Lecturer at the Centre for International Health and Develop-

ment in the Institute of Child Health. She trained in medical anthropology and demography, and has worked in Africa, Asia and Latin America. Her work focuses on developing and evaluating community-based approaches to maternal and child health and in combining qualitative and quantitative approaches to inform the design and evaluation of programs and interventions. She has a particular interest in care seeking behaviors and has conducted qualitative research exploring the perceptions of the patient and the community on the provision of anti-retroviral therapies both in the USA and in Africa. M A RCI A C . INHOR N , PhD, MPH, is the William K. Lanman Jr. Professor of

Anthropology and International Affairs in the Department of Anthropology and The Whitney and Betty MacMillan Center for International and Area Studies at Yale University. She also serves as Chair of the Council on Middle East Studies. A specialist on Middle Eastern gender and health issues, Inhorn has conducted extensive research on the social impact of male and female infertility, assisted reproductive technologies, and reproductive tourism in Egypt, Lebanon, the United Arab Emirates, and Arab America. She is the author of three books and the editor of six books on reproduction and global health; co-editor of the Berghahn Book series on “Fertility, Sexuality and Reproduction”; and founding editor of JMEWS (Journal of Middle East Women’s Studies). She is past-president of the Society for Medical Anthropology of the American Anthropological Association. C A R L K ENDA LL is Professor of Medical Anthropology, and former Chair of the

Department of International Health and Development, Tulane University School of Public Health and Tropical Medicine, where he has worked since 1993. He is Founding Director of the Center for Global Health Equity, focusing on health and development, and disparities in health systems and health outcomes. He focuses on program evaluation, health seeking behavior, health systems, and university capacity building. Dr. Kendall is a Fulbright Senior Fellow, was a member of the Panel on Data and Research Priorities for Arresting AIDS in Sub-Saharan Africa of the National Academy of Sciences, and was a member of the Commission on AIDS and Education of the American Anthropological Association. A RTHUR K LEINM AN , MD, MA, PhD, is Esther and Sidney Rabb Professor and

Chair, Department of Anthropology. For three decades he has worked as a medical anthropologist, both in the Department of Anthropology at Harvard and in the Department of Social Medicine at the Harvard Medical School. A physiciananthropologist, from 1991 to 2000 he chaired Harvard’s Department of Social Medicine and is presently the chair of the Department of Anthropology. His current research interests include the experience of chronic illness, social suffering, depression, emerging infectious diseases, substance abuse, suicide, political



violence, trauma, aging, ethnicity, and disabilities. The author of 5 books, coeditor of 20 volumes, and with more than 180 research and review articles and chapters, his most recent book is on moral experience and global social change, What Really Matters: Living a Moral Life amidst Uncertainty and Danger (2007). M A RY L AW, PhD, OT Reg. (Ont.), FCAOT is Professor, Associate Dean of Health

Sciences, and Director of the School of Rehabilitation Science at McMaster University, Hamilton, Canada, and Co-Director of CanChild Centre for Childhood Disability Research. Her clinical and research interests include the development, validation, and transfer into practice of outcome measures; evaluation of interventions for children with disabilities; development of evidence-based practice; and the study of environmental factors that affect the participation of children with disabilities. Her edited books include: Evidence-Based Rehabilitation: A Guide to Practice (2002) and with Carolyn Baum and Winnie Dunn, Measuring Occupational Performance: Supporting Best Practice in Occupational Therapy (2005). K Y LE A L A INA LIESE graduated with highest honors from Emory University and

earned an MA from Stanford University in 2005. Currently she is an advanced PhD candidate in the Department of Anthropology at Stanford University. Her research asks how reproductive morbidity and mortality are indicators of the long-term and far-reaching effects of social upheaval. Between 2005 and 2008, she worked in villages on each side of the river separating Tajikistan and Afghanistan, in the remote, contiguous region of Badakhshan. Her dissertation research explains the enormous variation in maternal mortality that has developed across this narrow border. Her graduate work has been supported by a Fulbright Fellowship, a National Science Foundation Dissertation Improvement Grant, and by the Clayman Institute for Gender Research. LENOR E M ANDER SON , PhD, FASSA, FWAAS is Research Professor in the School

of Psychology, Psychiatry and Psychological Medicine, Faculty of Medicine, Nursing and Health Sciences, and the School of Political and Social Inquiry, Faculty of Arts, at Monash University, Melbourne. She is a medical anthropologist and social historian, whose research interests include gender and sexuality, and infectious and non-communicable disease, among minority populations in Australia and in Asia and Africa. Her published work includes Sickness and the State: Health and Illness in Colonial Malaya, 1870–1940 (1996), Global Health Policy, Local Realities (2000), and Rethinking Wellbeing (ed. 2005). RON M AY NA R D, PhD, MPH, MSW, has worked for almost twenty years with

local, state, and national initiatives in the areas of community based health and chronic disease. He has conducted research and evaluation with the Group Health Community Foundation, Battelle Research Centers, the Robert Wood Johnson Foundation, and the University of Washington. Ron has also conducted



ethnographic research related to risk and prognostication among adults with cystic fibrosis and has published in the Medical Anthropology Quarterly. He is presently with the Center for Community Health and Evaluation of the Center for Health Studies in Seattle. ANN MILES , MPH, PhD is Professor of Anthropology and Gender and Women’s

Studies at Western Michigan University in Kalamazoo, Michigan. Her research in southern Ecuador over the past 20 years has focused on three broad areas of concern: gender, families and social change, the commodification of medicine and healing. Her most recent work documents the experiences of women suffering from the chronic illness lupus. She is the author of From Cuenca to Queens: An Anthropological Story of Transnational Migration (2004) and co-editor of Women and Economic Change: Andean Perspectives (1997). She has written numerous articles and book chapters on the transformations occurring to the discourses and practices of natural and “traditional” medicine in Ecuador. MUH ANA SOFI ATI UTA MI , Dra Msi, a clinical psychologist, is Senior Lecturer

in the Department of Psychology, Gadjah Mada University (UGM), Yogyakarta, Indonesia. She teaches abnormal psychology, behavior modification and mental health for undergraduates. She is also responsible for running the clinical psychology training program at the masters degree level. Muhana is a member of the Indonesian Clinical Psychology Association. Her research interests include psychological dimensions of cancer and cancer treatment, schizophrenia, positive psychology (well being), and religious coping. She is a member of the research team for the Yogyakarta site of the International Pilot Study of Onset of Schizophrenia NIDA UL H ASANAT, Dra, MSi, a clinical psychologist, is Senior Lecturer in

the Department of Psychology, Gadjah Mada University (UGM), Yogyakarta, Indonesia. She teaches counseling psychology, projective psychology, and psychology of emotion for undergraduates. She also teaches in the M.A. program for clinical psychology at UGM. Her research interests include studies of emotions, facial expression, depression, schizophrenia, psychological aspects of cancer and diabetes, and positive psychology (happiness). Currently, she is one of the researchers for the Yogyakarta site of the International Pilot Study of Onset of Schizophrenia. C A ROLY N SMITH-MOR R IS is Associate Professor in the Department of Anthro-

pology at Southern Methodist University in Dallas, Texas. Her work focuses on chronic disease and the health impacts of culture change and acculturative stress in North America. She is engaged in several research programs among migrating Mexican workers, among poor African-Americans in Dallas, and for the Gila River Indian Community of Southern Arizona, a tribe that suffers from



the highest recorded rates of Type 2 diabetes in the world. She published Diabetes Among the Pima in 2006 and has several articles on diabetes, reproduction, health care ethics, and end-of-life care. ELISA J. SOBO is Professor of Anthropology, San Diego State University. Her

interests include medical travel, biomedical and other medical cultures, organizational issues in healthcare and health research, disparities and cultural competence, health-related stigma, risk perception, reproductive and sexual health, childhood, nutrition and foodways, qualitative methods, and Jamaican culture. Dr. Sobo has served on the executive board of the Society for Medical Anthropology and the Medical Committee of the Royal Anthropological Association as well as on several editorial boards for journals. She has authored, coauthored, and co-edited ten books, including Choosing Unsafe Sex and, most recently, Culture and Meaning in Health Services Research, which is both a methodology text and an ethnographic account. SUBANDI , PhD, is Associate Professor and Vice Dean for Academic Affairs, Fac-

ulty of Psychology, Gadjah Mada University (UGM), Yogyakarta, Indonesia. He received his doctoral degree from the Department of Psychiatry at the University of Adelaide, writing his dissertation on psychocultural dimensions of recovery from psychotic illness in Java. He currently teaches culture and psychopathology, psychotherapy, qualitative research, and Islamic psychology at UGM. Since 1996 he has been working with Prof. Byron Good on research projects looking at culture, psychopathology, and therapy in Java, with a special interest in early experiences of psychosis. Subandi also helped lead a collaborative UGM/University of Melbourne project, supported by World Vision Australia, to provide psychological services for tsunami affected people in Aceh. DENNIS W IEDM AN teaches anthropological theory, research methods and

medical anthropology as an Associate Professor in the Department of Global and Sociocultural Studies at Florida International University, Miami, Florida. His 1970s research among Oklahoma Native Americans correlated the onset of the Type II diabetes epidemic with the transition to a cash economy and a sedentary lifestyle. He also publishes on Peyotism and Organizational Culture. His current research focuses on the health of Indigenous peoples of America, especially in Oklahoma and Alaska. His edited book Ethnohistory: A Researcher’s Guide (1986) reflects his concerns with research methods. He served on the Executive Board of the American Anthropological Association (AAA), and as President of National Association for the Practice of Anthropology (NAPA).


access, 13, 79–80, 94, 141–142, 150–152, 248; and AIDS, 177, 186, 193; effects from, 216, 218, 222, 231; to food, 44, 48; and gender, 16, 98, 131–133; to health care, 4, 12, 15, 24, 98–100, 137, 146, 212; and socioeconomic relations, 158, 167 acculturation, 40, 213, 218, 227 acute conditions, 1, 7, 10, 11, 14, 15, 17, 21, 68, 104, 112, 247; chronic and, 2, 3, 6, 11, 12, 13, 18, 21, 29; critique of chronic–acute dichotomy, 23, 24, 26, 30–32, 34, 36; degenerative, 55; diabetes, 30, 35; distinguishing from chronic, viii, ix, 8, 9, 176; and health care, 35, 218, 222, 231, 240; HIV, 12, 175–177; lupus flares, 115; onset psychosis, 58, 60, 63, 66–68; schizophrenia, 73; in South Africa, 183– 185, 188, 193; and stress, 50; symptoms, 66, 104; temporal marker, 22, 23, 27, 35, 37, 163. See also dichotomies advocacy, 57, 213, 220, 224, 245 Afghanistan, 131–153 agency, 94, 119, 133, 159 AIDS, 7, 180–187, 189–190, 191, 193–194, 214; as chronic condition, 234; lupus and, 116; in South Africa, 175–194. See also antiretroviral therapy (ART, ARV); human immunodeficiency virus (HIV) Alaska, 44, 45, 53 ambiguity, 32, 114, 122, 126, 236 antiretroviral therapy (ART, ARV), 15, 79, 175–194 passim Australia, viii, 16, 66, 100–102, 236, 245; children in, 242; women in, 96, 99, 108– 109, 112 authority, 17, 30, 77, 157, 235; of physician, 13 autonomy, 10, 98, 138, 160, 233, 242, 249 barriers, 16; to health services, 98; to parents, 219; to women, 99, 131, 147, 151 Becker, Gay, vii, viii, 35, 53, 174, 227 binaries, 3, 12, 26. See also dichotomies biography, 11, 85, 117; autobiography, 12; disruption of, 81, 83, 86, 94 biomedicine, viii, 4, 11, 16, 21, 29–30, 35, 37, 133; and chronicity, 25–28, 31, 34, 103, 158, 175, 176, 230; and diabetes, 30–32, 48; dichotomy in, 11, 33; and disease, 194, 216,

219; dominance of, 10, 104; evolution of, 145, 197, 210, 214, 225; extrabiomedical, 36; globalization of, 10, 94, 196, 202, 250; and health care, 29, 47, 134, 140, 165, 177, 231; and health conditions, 162; and infertility treatment, 89–90, 94; and lupus, 122, 124; and occupational therapy, 232, 234, 236, 239–240; paradigm of, 5, 6, 13, 24; research, 40, 176, 193; structures of, 23; and technology, 144; and temporality, 3, 14, 22–23, 157; and women, 101, 146–147 body(ies), 35; able-bodied, 104, 201, 207, 210; of children with healthcare needs, 214, 217, 228; and chronicity, 39; debilitating effects on, 4, 7, 26; and discomfort, 17; and disease, 28, 198, 217; health of, 195, 197, 200, 203; and healthcare, 47, 161, 232; and infertility, 78, 94; and lupus, 115, 124–126; and occupational therapy, 233, 244; social, 204–205, 210; and stress, 50–51; and weight, 42, 45, 144, 172, 177; women’s, 102, 105, 109–112 borders: and disease, 24, 35; geographical, 80, 91, 134–135, 145, 152–153; political, 81; and women, 132, 148 Bourdieu, Pierre, 46, 114, 128 cancer, 2, 6, 8, 14, 16, 25, 203, 241; and AIDS, 175; breast, 30, 97, 99, 113; cervical, 4, 30, 99; ovarian, 104; treatment, 7, 17; and women, 96 Canguilhem, George, 104, 201, 205 capacity, 3, 94, 118, 125, 141, 157, 187–188, 215; mental, 221, 232, 234, 311; physical, vii, 7, 162, 230, 236, 241–242; reproductive, 108; social, 107 capitalism, 9, 45, 160–161, 167, 170, 236; culture of, 34, 45–47; effects of, 2, 168; and economic personhood, 160; and world economy, 10, 46 cardiovascular conditions, 6, 17, 50; disease, 42, 49, 98, 110, 167–168 (see also heart disease); fitness, 38, 43, 52 care-giving, 52, 99, 129, 163, 199, 218, 238–239, 247–251; biomedical, 14, 90, 134; care-coordination, 222–224, 227–228; care-seeking, 65, 73, 147; care system, 192, 240–242; for diseases, 2, 11, 13, 58, 64, 66,




care-giving (continued) 221, 234; and gender, 97, 137; and HIV, 16, 186–189; improvements, 74; inadequate, 8, 139, 190; for infertility, 94; obstetric, 131–133, 140–141, 143–146, 151–152; quality of, 214; self-care, 177, 180, 231, 245. See also access: to health care; health care cash economy, 41–42, 314 children, 16, 43, 51, 60–64, 71, 102–103; care for, 121–123, 129–130, 162, 205–209, 211, 213, 217, 219; death of, 167–168; desire for, 84, 86, 88, 93, 108–111; diagnosis of, 221–226; and disability, 242–243, 245; and disease, 46, 186, 189–190, 197–198, 238; health care for, 4, 18, 92, 218, 220, 240, 247; with special health care needs (CSHCN),13, 69, 212–217, 227–229, 231–233; treatment for, 248 childbearing/childbirth, 27, 77, 79, 81, 87, 145–151, 200, 202; caesarean, 98; repeated, 133, 136; and women, 96–98, 131–143, 153, 182. See also reproduction childlessness 83, 85, 94–95. See also infertility; reproduction chronopolitics, 158–159, 161, 164 citizen, 80, 94, 116, 134, 173; good, 179; in Middle Eastern states, 79–81, 90–91, 93, 95; woman as, 148, 152 class, 129; and race, 55, 119, 217, 245; and society, 99; and socioeconomic status, 6, 15, 38, 40, 78, 80, 82, 142, 238; and work, 120, 128 (no-one mentioned eg Giddens?) clubfoot, 212–229 passim coherence, 94, 159, 228 colonization, 4–5, 28, 45; Coca-colonization, 9; of lifeworlds, 21; of new conceptual territories, 34 commodities, 9, 23, 28, 38, 45–46, 50, 52, 142, 210 communicable diseases, 3–7, 12, 46, 168, 176; versus noncommunicable diseases, 8, 18, 98–99 communication, 9, 44–45, 79, 87, 118, 220, 224 community, 17–18, 24, 30, 70, 77, 214; and children, 63, 243; communal strategies, 2, 13, 29, 31–33, 44, 56, 177; chronicities, 51–52; and disease, 27, 178; and disease prevention, 183–186, 188–189, 191, 194; health, 36, 48, 53, 166–167; and infertility, 78, 85, 88, 93; and occupational therapy, 230, 234, 239; and rehabilitation, 240, 242; rural and indigenous, 52; settings, 56, 196; and stress, 98; and women, 107, 136, 145, 181; whole communities share diagnosis, 23, 28 consultations, with medical doctors, 106, 146, 171, 218 consumerism, 46, 53, 200, 210, 223 consumers, 2, 67, 100, 185; advocacy for, 57; medical, 11, 14, 34, 221, 225 continuity, vii, 35–36, 195; health, 18, 25, 190, 211, 227–228 control, vii, 4, 47–48, 82, 235; of children, 242; of diabetes, 8, 27–28, 30–32, 160; of

diagnosis, 2–3; of health, 160–163, 171–173, 200, 203–204, 241; of infection, 15, 122, 176, 179, 198, 209, 247–249; social, 157–158, 195; of stress, 50, 52; of women, 94, 98, 100, 107, 150 cost of treatment, 2, 91–92 culture, 25, 50, 58, 145, 211; of capitalism, 45–46; and change, 33, 40, 157, 195; of chronic diseases, 248–249; consumer, 210; as context of illness, 12, 113, 158, 250; of illness, 54, 71; and occupational therapy, 232, 235; race and, 183, 190; social, 207, 241; work, 225, 237 cure, 25, 178, 209–210, 248; diagnosis and, 2, 213; and disease, 13–15, 26, 217–219, 234. See also incurable diseases; recovery cystic fibrosis, 195–211 passim degenerative disease, 5–6, 12–14, 53, 54–58, 67, 72, 103, 159, 166–168, 195–211 passim dementia, 12, 54–55 demoralization, 50, 164, 188. See also hopelessness depression, 54, 73, 81, 83, 97, 164, 177, 179, 250; and stress, 51, 161; and women, 129 deterioration, 9, 55. See also degenerative disease developed/developing countries, 43–44, 56, 168, 175, 243, 247–248; and food, 48; and health, 23, 32, 35, 38, 40, 42, 113, 141, 166; and labor, 9, 136; and mortality, 131, 134; progress of, 4, 177, 193, 240 Dewey, John, 232–234 diabetes, 2, 16, 21–37 passim, 38–53 passim, 113, 157–174 passim; care, 13, 110, 158, 164, 171, 173; as chronic disease, 5, 7–8, 17, 21, 23, 43–45, 47–50, 160–163, 175; and economic transition, 6, 11, 42, 165; gestational, 27–28, 30–32, 104, 205; and health, 10, 168–169, 241, 250; treatment for, 159 diagnosis, 2–3, 11, 17, 23–25, 31–32, 99, 220, 227; accuracy of, 104, 106, 115; acuteness of, 2, 3, 7, 11, 13, 14, 21, 23; of diabetes, 26–31, 33; and disease classification, 13–15, 21, 34, 219, 221; diagnostic cutoff, 27, 37; proximal factors, 23–24; and temporality, 22; and therapy, 157, 159; and treatment, 10, 232; of women, 97, 101, 103, 110, 116, 129 dichotomies: acute, 21–24, 26–27, 29–31, 34–36; diagnostic, 3, 30; of illness, 3–6, 11–18, 23, 32. See also binaries diet, 40, 44, 50; change in, 4–5, 47, 49; and diabetes, 161, 169; and disease, 8, 43, 249; and health, 52. See also nutrition disability, viii, 14, 35, 56, 67, 195, 219, 246; in children, 210, 222, 224, 243; and choices, 210–211; and chronic conditions, 12, 16, 18, 216, 232, 242; and disease, 198, 200–201; rights, 225–226; social, 70–71, 197, 231; studies, 236, 238–240, 245; theorists, 104 discipline, 157, 236; focus of, 158, 160–161, 201, 210. See also Foucault, Michel discourse: of chronicity, 3, 7, 21, 36, 250; disability, 213, 245; gender, 9; health,


10–11, 16, 34–35; moral, 7, 128; passive, of chronicity in developed nations, 23–24; political, 185; social, 178; of suffering, 116; women’s, 94, 107, 111, 123 disfunction: bodily, 97, 101; and disease, 16, 98, 216, 228; and health, 105, 107, 112, 177; social, 65, 197. See also dysfunction disruption, 28, 36, 96–112 passim, 138; biographical, 83–84, 94, 101; continuum of, 24–26; embodied, 96; of health, 14, 97; of illness, 34, 107–108 donor, 78–79, 89, 139, 199 Down Syndrome: care, 223–224; children with, 212–229 passim Dubos, René, 25, 26 dysappearance, and disability, 195–198, 200, 211 dysfunction, 16, 97–99, 196–197, 216, 228; menstrual, 107–109; sexual, 177; social, 65 Ecuador, 113–130 passim; health in, 16, 113–116; women in, 13, 17, 117, 119, 126, 128–129 education, 2, 14, 24, 52, 79–80, 100–101, 140; compulsory for girls, 133; health, 10, 22, 72, 184, 193, 242; opportunities for, 152, 211, 232–233; women’s, 99, 107, 143, 146, 148–150 embodiment, 32, 195; of chronic conditions, 12, 17, 162, 195; disruptions of, 96, 107; and modernity, 39, 43, 50–51; of socially constructed time, 46; of suffering, 81, 165 emotion, 32–33, 63–64, 69–70; and children, 224, 229, 245; and health, 170, 177, 234, 248. See also suffering endemic disease, 33; evolution toward, 23 endometriosis, 102, 106, 112; diagnoses of, 96, 107, 110; and disease, 99–101, 103, 108 entitlement: to infertility services, 92, 94; to service, 216–217, 222 epidemics, 10, 38, 40; diabetes, 27–28, 48; disease, 2, 5, 52, 135; and health, 9, 23, 35; HIV, 178–179, 185 epidemiology 1–2, 4–5, 7, 11, 167, 176, 222. See also health transition episodic disease, 14, 17, 23, 151, 196; and chronic conditions, 103, 152, 198; model, 132–133; and women, 107, 112 Estroff, Sue, 24–25, 38, 52, 216, 227 eugenic movement, 55 exclusion, 93, 98, 104, 180, 200, 231 expert knowledge, 195–196, 202 exposure: to hardship, 81; to the sun, 83, 115, 136 family, 83, 88, 98, 121–124, 128–129, 231; affected by health conditions, 46, 48, 143, 186, 189, 206; care provided by, 52, 66, 161, 241, 248–249, 251; and doctors, 13; and dysappearance, 197–198; environments, 69, 70, 235–236; and expressed emotion, 69, 105, 119, 236; planning, 78–79, 133, 141; women and, 107, 112 fees, for health care, 99 femininity, 96, 100, 107–109, 111, 118–119


fluidity, of life states, 3 folk, 171, 186; epidemiology, 176; remedies, 96 food: accessibility of, 12, 41–42, 53, 135, 142; chronicities of, 48–50, 172, 190–192; diet, 4–6, 9, 43–46, 52, 171; and metabolic disorders, 38, 160, 162, 169; production, 47–50, 53 Foucault, Michel, 26, 46, 158, 173, 245 Frankenberg, Ronald, 22, 34, 158 gender, 119, 128, 238; and age, 182; and chronicities, 51–52, 108; and health conditions, 9, 12, 16, 96–100; identity, 110– 112; inequality, 15, 129, 133, 141, 148–150, 235, 237, 245; roles, 183–184 genetics, Genes genetics 11, 27, 30–31, 38–39, 43–44, 55, 72–73, 78, 81, 115, 193, 204–205, 209, 215, 219, 241; tests 221 globalization, 5–6, 8–11, 38, 45–47, 94, 245; of biomedicine, 196, 202, 227 government/governmentality. See state gynecological care,145; problems, 17, 96–97, 107, 112. See also infertility; obstetric care; reproduction HAART. See antiretroviral therapy habitus, 1, 46 health care, 13, 24, 47, 89, 92, 136, 188, 218, 228; funding, 23, 142; needs, 212–215, 219, 221–223, 242; resources, 35, 52, 93, 113, 165, 191, 239–240 health transition, 3–5, 7, 9, 167, 172; and nutrition, 49, 166; “third phase,” 23. See also epidemiology; globalization heart disease, 2, 7–8, 16, 25, 175, 214, 222; and cardiovascular fitness, 52; and diabetes, 21, 44–45, 49, 113, 241, 250 hegemony, 6, 9, 11, 21, 26–30, 33, 215, 230, 244; hegemonic conceptualization, 2 heredity, 55. See also genetics heterogeneity, 69, 74; in psychotic illness, 58, 67, 72–74 HIV. See human immunodeficiency virus (HIV) hope, 78, 91, 101, 186–188, 201, 217, 248; and HAART, 188–190 hopelessness, 55–56, 62, 64. See also demoralization hospitals, 4, 56, 66, 137–138, 143–147; childbirth at, 98, 134; and children, 212; costs, 43; funding for, 3, 139; services, 7, 99–101, 133, 141, 181 human immunodeficiency virus (HIV) 7, 12, 15–17, 23, 189, 190–194; children with, 214; effects of, 7, 16, 178; Preventing Maternal to Child Transmission (PMTCT) program, 182; in South Africa, 175–194; treatment for, 177, 188, 250; and women, 187. See also AIDS; antiretroviral therapy human rights, 7, 79, 81, 91, 230 icons, 5, 112, 148, 197 ideals, 7, 25, 33, 164, 201, 223; cultural, 113, 221, 225 (see also culture)



identity, 11–12, 23–25, 28–29, 32–34, 50; community and self, 36, 100, 102, 107–108, 110, 207; illness’s influences on, 15, 21, 35, 172, 176 ideology, vii, 55, 111, 148, 179 illness, viii, 162, 241–242, 247–250; acute, 7, 68; chronic, 8, 16, 18, 107, 113–114, 126, 129, 163, 198, 200; cystic fibrosis, 206, 208; and disability, 230, 235, 238, 240; experience, 12–13, 21, 35–36; HIV, 175–177, 187, 192; impacts of, 3; mental, 54–59, 65, 67, 69–70, 72–74, 234; narrative, 33, 114, 116, 126, 129; symptoms, 31–32, 66; treatment, 98 immigrants, 2, 4, 9, 82, 99–100, 213. See also migrants immune system, 15, 33, 104, 115–116, 203; and immune-resistant disease, 15 immunization, 4, 214 impairment, 35, 60–64, 67–68, 71–72, 104; and disability, 208, 214, 234, 239, 246; reproductive, 81, 84, 89; social, 70 impotency, 77. See also infertility incurable diseases, 11, 16, 21, 81, 94, 101, 203. See also cure indigenous people, 2, 38, 40, 52, 118, 148; Australian, 99–100; on reservations, 46, 51 individual, 3, 17, 31, 48, 50, 58, 113, 225, 232; behavior, 45–46; and community, 32–33, 37, 51–53, 65–66, 159, 184, 193–194; disappearance of, 196–197, 200; and family, 74, 231, 240; individualism, 10, 211; health of, 164–165, 173, 188, 206, 244 Indonesia, 54–74 passim, 134, 165–173; clinics in, 159, 165–168, 183; psychotic illness in, 65 (see also schizophrenia) inequality, 2, 128; of chronicities, 51; gaps between rich and poor, 1, 3, 9; gender, 133, 141; structural factors in, vii, 18, 38, 99 infectious diseases, 1, 4–5, 7, 23, 35, 77, 135, 142, 240; versus chronic, 40, 175–176, 193–194, 247; prevalence of, 21, 24, 42, 250. See also health transition infertility, 12, 15, 101; female, 34, 96–98, 102; male, 77–95; repeat, 94, 102 injury, 1, 8, 93, 234, 243 Institute of Medicine pages??? institutions, 3, 46, 52, 119, 148–149, 235, 242; cultural, 47, 114; psychiatric, 55, 66, 233 insurance, 7; health, 2–3, 100, 120, 206 International Classification of Disease (ICD)/International Classification of Functioning, Disability, and Health (ICF), 104, 246 invisibility, 6–7, 11, 16, 24, 208 in vitro fertilization (IVF), 78–79, 81–82, 88–91; intracytoplasmic sperm injection (ICSI) 78, 79, 87–91 passim, 94 Islam, 63, 65, 88, 134, 148–149. See also Muslims Israel, 16, 77–84, 87–88, 91–95 Jews, 78–80, 91–92 Jordan, 80–81, 86

Latin America, 113, 115–116, 118–119, 245. See also Ecuador lay people, 11, 17, 27, 104; understandings of, 101 Lebanon, 16, 80–85, 87, 90–94 life-course, 81, 86 life expectancy: for Australian indigenous women, 99–100; changes to, 113, 167–168, 172, 250; with disease, 13–14; in response to human development, 4–5 lifelong conditions, 1, 4, 13, 18, 21, 29, 30, 34, 55, 113; care for, 2, 17, 24; determinants of risk for, 16; and health status, 3, 23, 28, 100; management of, 11–12, 32, 36, 110, 126 lifestyle, 6, 42, 176; and bodily function, 9, 241; chronicities of the modern, 38, 43, 47–48, 50; and food, 44–45, 53; Western, 159, 165–170. See also globalization lifeworld, 3, 18, 21, 35, 57, 65, 232, 246 lived experience vii, 3, 5, 18, 21, 35–36, 161, 175, 188, 196 longevity 6. See also epidemiology; health transition longitudinal data, 49, 58–74, 219; studies, 54 loss, sense of, 107, 109 lung function, 197–198, 202–204 lupus, 113–130 passim malnutrition, 136–137, 141–142, 148, 152. See also nutrition marginalization, 24, 81, 93–94, 116, 120, 211, 245, 247; of women, 17, 98 manhood 77, 86, 95. See also masculinity Marianismo, 118–119 marriage, 77–78, 81, 86, 95, 101, 133, 143, 200, 227; age at, 149–151; child, 83–84, 148 masculinity, 78, 83, 85–87 maternity, 109, 151, 186; and child health, 4; maternal death, 146–148; maternal mortality rate (MMR), 131–153 passim, 167. See also pregnancy medical care, 8, 65–66, 90, 165, 197, 241; access to, 4, 99; biomedical care, 14, 90, 134 medication, 11–12, 17, 24, 48, 72, 90, 99, 115, 120, 160; and care, 216, 248; for diabetes, 26; and HIV, 185, 189–191; for psychosis, 56, 59–63, 66–67, 69–70; and transplants, 203–204, 210; and women, 101, 103, 105, 110. See also pharmaceuticals menopause, 13, 97–98, 101, 105, 107; early, 96, 102, 106 menstrual health, 96, 102, 105, 108, 110; premenstrual/menstrual tension, 97, 103, 106–107 metabolic conditions, 6, 38–40, 44. See also metabolic syndrome (MetS) metabolic syndrome (MetS), 38–53; and fitness, 43, 51–53; rates, 157 midwifery, 63, 134, 137, 139–141, 143, 152 Middle East, 77–95. See also specific countries migrants, 50, 61, 81, 142, 172, 183. See also immigrants mirage of health, 25–26 miscarriage, 101–102, 107


modernity, 9, 50–51, 144, 146, 166, 172; chronicities of, 38–40, 44, 46–48 morality, 12, 17, 55, 88, 116–120, 160, 176–177, 236, 247; and behavior, 122–123, 127–128, 194, 245 morbidity, 1, 4, 18, 46, 149, 151; comorbidity, 6; and disease, 22–23 mortality, 1, 46, 115, 177; and disease, 12, 22–23; early, 4, 8, 99; infant, 167; maternal, 131–134, 136–137, 140–142, 145, 148–152 Muslims, 78, 82, 84–85, 87–89, 134, 138, 148; Palestinean Muslims, 79; Shia Muslims, 82; Sunni Muslims, 82, 89, 143. See also Islam narrative, 6, 11, 65–66, 82, 93, 102–103, 195– 198; clinical, 171, 173; health-related, 17, 31, 33, 34, 200–202, 210–211, 237–238, 249; women’s, 114, 116, 122–123, 126, 129, 163 natural, the, 12, 17, 26, 43, 46, 72, 118–119, 133, 193; course of disease, 21, 22, 165; history of disease, 3, 5, 56, 103 Neocatechumenal movement, 125–126 neoliberalism, 9, 94, 245 networks, 100, 114, 236, 239; disabling features of social, 216; social, 101, 134, 196, 225, 233, 250 noncommunicable diseases, 5–6, 8, 18, 98–99. See also communicable diseases; lifestyle norm/normal, 26, 34, 43, 45, 54, 84, 94, 96, 140, 248; and AIDS, 175, 178–179, 185–186, 189; conditions, 97, 100, 102, 241, 243; health care, 141, 160–161, 164; life, 196, 202, 203, 205–207; normalization, 87, 92, 187, 194, 201; social, 31, 37, 200, 204, 210–211, 249; and women, 104–106, 110, 112 nutrition, 4, 44, 49, 132–133, 179; and fitness, 52–53; malnutrition, 136–137, 141–142, 148, 152; and nutritionists, 47; quality of, 5–6, 193. See also food obesity, 5–6, 10, 16, 23, 40, 42–43, 110; and disease, 38–40, 49 obstetric care, 131–134, 140–141, 143–147, 205; complications, 135–137, 148, 150–152. See also childbearing/childbirth; gynecological care; maternity occupational therapy, 14, 18, 222, 230–246 Occupational Therapy without Borders, 239–240, 245 occupations, sedentary, 4–6 outcomes: health, viii, 3, 11, 97, 100, 132, 134, 152, 241; research, 71 ovary, 107; polycystic ovarian syndrome (PCOS), 96; ovarian problems, 101, 104– 105, 110 pain, 113, 119–121; induced, viii, 5, 11, 14, 78, 103, 105, 115, 216, 228; of infertility, 96–98, 101; in women, 106–110, 135, 143 Palestine, 79–88, 91–95 Palestinian Liberation Organization (PLO), 80 patriarchy, 77–78


pattern(s), 66, 73, 97, 239; consumption, 48, 168, 171–172; disease, 1–4, 8, 10, 22; health, 24, 241; single dominant, of chronicity and degeneration, 67 PEPFAR. See U.S. President’s Emergency Plan for AIDS Relief personhood, 10, 77, 85, 97, 160, 236 pharmaceuticals, 2, 18, 10, 56; pharmacopeia, 112. See also medication Pima Indians, 11, 21, 23–37 passim, 42 pluralism, 147, 165 plurality, of time, 157 political: activities of daily living, 5, 80, 148–149, 245; chronicity, 81, 159, 194, 227, 231, 247; economy, 10–12, 18, 21, 31, 33, 36, 40, 48, 250; environment, vii, 3, 6, 132–133; health, 4, 8, 24, 28, 32, 167, 216, 246; leadership, 46, 90, 185; timescapes, 157; violence, 16, 82 politics, 18, 32, 35, 92, 94, 177, 233, 236, 240, 245; chronopolitics, 158–159, 161, 164; of health care, 93 polycystic ovarian syndrome (PCOS), 96 pregnancy, 26, 98, 111, 205; and childbirth, 147, 149–150; and diabetes, 27–28, 30–31; disorders of, 101–102, 107; and health, 17, 33, 96–97, 136–138, 206, 214. See also maternity; reproduction primary care, 99, 223, 247, 250 productivity, 160, 200, 250 pronatalism, 77, 79, 81, 133, 148 public health, 3–4, 31, 52, 133–134, 167; diagnosis, 27; facilities, 179; problems, 39, 48; medical anthropology, 230, 246; women’s health, 96–97 punishment, 117, 127 recovery, 2, 54–55, 57, 244; potential for, 168; from psychosis, 59–61, 67–68, 71–73. See also cure recurrence, 17, 40, 97, 103, 111. See also remission refugees, 94, 100, 142, 245; camps, 80–85, 90 rehabilitation, 25, 67, 230, 236, 238, 239, 243, 245, 250; Community Based Rehabilitation, 240 religion, 83, 119; Catholicism, 116–118, 128; Christianity, 65, 79, 82, 125, 225; and God, 63, 69, 86–87, 117–118, 120, 125–127, 135, 146, 149; and God’s will, 139, 165, 226. See also Islam remission, 14, 17, 26, 30, 56, 67, 69, 220; and recovery, 2; recurrent, 103, 115, 213, 216 repetition, 23, 30, 164, 199; in trials, 89–90 reproduction, 17; ability for, 81, 97, 110; and tract infections, 97; women’s, 9, 103, 111, 133, 147. See also childbearing/childbirth; infertility; menstrual health resilience, 9, 15, 32, 33, 71, 72, 132, 133 responsibility, ix, 17, 24, 192; individual, 10, 13, 94, 113, 195; public, 16, 188 risk, 8, 23, 27, 30–31, 69–70; chronicity of, 15, 26, 96, 110, 115, 131; from cystic fibrosis, 195–198, 200–203, 206–211; gender influences upon, 16, 97–98, 128;



risk (continued) local interpretations of information about, 28, 32–33; maternal, 132–134, 136–138, 145–146, 148–149; for Metabolic Syndrome, 39, 42, 47, 50–52; of poverty, 140–142, 151–152; of Western lifestyles, 167–168 sampling, 181–182, 186 schizophrenia, 54–74, 216, 234 screening, 36, 72, 216; and pregnancy, 98–99, 133; tests, 27, 30–32, 35 seasonality, 38, 41, 43–50, 157, 227 secrecy, 86–88 sedentary lifestyle, 4–6, 210, 241, 314 self-management, 96, 159–162, 173 semantic network, 172 severity, 8, 17, 25, 115, 121; degrees of, 89, 94, 103, 112 sex/sexual, 115, 193; activity, 178, 184; function, 33, 108, 177; and gender, 112; license, 97–98, 119; sexuality, 77, 117, 108; sexually transmitted diseases (STDs), 78, 99, 194 South Africa, 175–194, 236 spirit practices, 58–59, 62, 65, 71–72, 124, 139, 141 state, 5, 46, 53, 149, 152; and globalization, 45; opposition, 91; -subsidized medical treatment, 2, 28, 91, 96, 99; services, 79–80, 101, 180–183, 192; statelessness, 81. See also Foucault, Michel stigma, 15, 18, 29, 34, 56–57, 70, 88, 95, 175, 189, 214, 221; associated, 7, 23, 70, 176–179, 250; effects of, 36, 77, 86, 127, 201, 210; and HIV, 183–186, 193; management, 219, 224, 226–228, 247–248; terms, 54 stress, 83; chronicities of, 50–51,53 stroke, 2, 8, 25, 163, 234, 241

structural factors, in health inequity, 2, 99 suffering, 50, 52, 103, 113, 115, 123, 128, 130 surgery, 16, 23, 30, 89, 90–107 passim, 109, 111, 136–140, 199, 201, 207, 210, 213 susceptibility, 11, 21, 33–34, 203 Tajikistan, 131–153 technology: and food, 47–50; hightechnology medical interventions, 81, 145 temporality, 2, 22–23, 26; assumptions, 14; authoritative scheme of, 22; calendars and schedules, 46; embodiment of socially constructed time, 46; trajectory of illness over time, 54 traditional birth attendant (TBA), 134, 143 transplants, 199–205, 209–211 treatment: costs of, 2; untreatable disease, 97 tuberculosis (TB), 7, 13, 17, 176, 177, 184, 250 ultrasound, 98, 105, 139, 147 unemployment, 8, 12, 51, 80, 83, 181, 184 U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), 177, 193–194 violence, 82 visibility, of illness, 148; to the state, 149 wage labor, 6, 46, 216 war, 80–84 passim, 245; Gulf War, 82; il harb, 83; Kosovo, 245; Tajikistan, 132, 134, 135, 142, 150, 153n.8; turf wars, 216; World War I, 234, 235; World War II, 235, 239 workers: healthcare, 136, 181, 182, 183, 192; health of, 8–9, 50, 51 World Health Organization (WHO), 2, 7, 14, 35, 39, 56, 57, 97, 144, 166, 240, 244, 246 Yogyakarta, Indonesia, 54–74 passim, 165–172