Sugar and Tension: Diabetes and Gender in Modern India 9781978803046

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SUGAR AND TENSION

MEDIC AL ANTHROPOLOGY: HE ALTH, IN­E QUALIT Y, AND SOCIAL JUSTICE Series editor: Lenore Manderson Books in the Medical Anthropology series are concerned with social patterns of and social responses to ill health, disease, and suffering, and how social exclusion and social justice shape health and healing outcomes. The series is designed to reflect the diversity of con­temporary medical anthropological research and writing, and ­will offer scholars a forum to publish work that showcases the theoretical sophistication, methodological soundness, and ethnographic richness of the field. Books in the series may include studies on the organ­ization and movement of ­peoples, technologies, and treatments, how inequalities pattern access to ­these, and how individuals, communities, and states respond to vari­ous assaults on well-­being, including ­those from illness, disaster, and vio­lence. Jessica Hardin, Faith and the Pursuit of Health: Cardiometabolic Disorders in Samoa Carina Heckert, Fault Lines of Care: Gender, HIV, and Global Health in Bolivia Alison Heller, Fistula Politics: Birthing Injuries and the Quest for Continence in Niger Joel Christian Reed, Landscapes of Activism: Civil Society and HIV and AIDS Care in Northern Mozambique Beatriz M. Reyes-­Foster, Psychiatric Encounters: Madness and Modernity in Yucatan, Mexico Sonja van Wichelen, Legitimating Life: Adoption in the Age of Globalization and Biotechnology Lesley Jo Weaver, Sugar and Tension: Diabetes and Gender in Modern India Andrea Whittaker, International Surrogacy as Disruptive Industry in Southeast Asia

SUGAR AND TENSION Diabetes and Gender in Modern India

Lesle y Jo W e av er

Rutger s Uni v er sit y P r ess

New Brunswick, Camden, and Newark, New Jersey, and London

Names: Weaver, Lesley Jo, author. Title: Sugar and tension : diabetes and gender in modern India / Lesley Jo Weaver. Description: New Brunswick, New Jersey : Rutgers University Press, [2018] |   Series: Medical anthropology | Includes bibliographical references and index. Identifiers: LCCN 2018015300 | ISBN 9781978803015 (hardback) |   ISBN 9781978803008 (paperback) Subjects: LCSH: Diabetes in women—India. | Women—Health and Hygiene—India. |   Women—Diseases--India. | BISAC: SOCIAL SCIENCE / Anthropology /   Cultural. | MEDICAL / Public Health. | HEALTH & FITNESS / Diseases /   Diabetes. | SOCIAL SCIENCE / Gender Studies. | MEDICAL / Endocrinology &   Metabolism. | MEDICAL / Diseases. | SOCIAL SCIENCE / Disease & Health Issues. Classification: LCC RA645.D5 W43 2018 | DDC 362.1964/6200954—dc23 LC record available at https://lccn.loc.gov/2018015300 A British Cataloging-­in-­Publication rec­ord for this book is available from the British Library. Copyright © 2019 by Lesley Jo Weaver 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, 106 Somerset Street, New Brunswick, NJ 08901. The only exception to this prohibition is “fair use” as defined by U.S. copyright law. The paper used in this publication meets the requirements of the American National Standard for Information Sciences—­Permanence of Paper for Printed Library Materials, ANSI Z39​.­48​-­1992. www​.­rutgersuniversitypress​.­org Manufactured in the United States of Amer­i­ca

To Annabelle and Miles

CONTENTS

Foreword by Lenore Manderson

ix

1

Opening a Win­dow on Diabetes Experience

1

2

Seeking Modern India

3

Balance: The Moral and Practical Work of Diabetes Management 41

4

Tension: Diabetes, Distress, and ­Mental Health

66

5

Sacrifice: Domesticity and Care among ­Women with Diabetes

95

6

Resilience: Living Well with Diabetes

121

7

Conclusion: Diabetes as Life

142

23

Appendix: Methodological Notes 159 Acknowl­edgments 163 Notes 165 Bibliography 169 Index 183

vii

FOREWORD LENORE M ANDERSON

Medical Anthropology: Health, In­equality, and Social Justice, a new series from Rutgers University Press, is designed to capture the diversity of con­temporary medical anthropological research and writing. The beauty of ethnography is its capacity, through storytelling, to make sense of suffering as a social experience, and to set it in context. Central to our focus in this series on health, illness, in­equality, and social justice, therefore, is the way in which social structures and ideologies shape the likelihood and impact of infections and injuries, bodily ruptures and disease, chronic conditions and disability, treatment and care, and social repair and death. The brief for this series is broad. The books are concerned with health and illness and with healing practices and access to care, but the authors illustrate, too, the importance of context—of geography, physical condition, ser­vice availability, and income. Health and illness are social facts; the circumstances of the maintenance and loss of health are always and everywhere ­shaped by structural, global, and local relations. Society, culture, economy, and po­liti­cal organ­ization as much as ecol­ogy shape the variance of illness, disability, and disadvantage. But as medical anthropologists have long illustrated, the relationships of social context and health status are complex. In addressing t­ hese questions, the authors in this series showcase the theoretical sophistication, methodological rigor, and empirical richness of the field, while expanding a map of illness and of social and institutional life to illustrate the effects of material conditions and social meanings in troubling and surprising ways. The books in the series move across social circumstances, health conditions, and geography, and their intersections and interactions, to demonstrate how individuals, communities, and states manage assaults on well-­being. The books reflect medical anthropology as a constantly changing field of scholarship, drawing on diverse research in residential and virtual communities, clinics, and laboratories, in emergency care and public health settings, with ser­vice providers, individual healers, and ­house­holds, with social bodies, ­human bodies, and biologies. Whereas medical anthropology once concentrated on studying systems of healing, par­tic­u­lar diseases, and embodied experiences, ­today the field has expanded to include environmental disaster, war, science, technology, faith, gender-­based vio­lence, and forced migration. Curiosity about the body and its vicissitudes remains a pivot for our work, but our concerns are with the location of bodies in social life, and with how social structures, temporal imperatives, and shifting ix

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Foreword

exigencies shape life courses. This dynamic field reflects an ethics of the discipline to address ­these pressing issues of our time. Globalization has contributed to and adds to the complexity of influences on health outcomes; it (re)produces social and economic relations that institutionalize poverty, unequal conditions of everyday life and work, and environments in which diseases increase or subside. Globalization patterns the movement and relations of ­peoples, technologies, knowledge, programs, and treatments; it shapes differences in health experience and outcomes across space; it informs and amplifies inequalities at individual and country levels. Global forces and local inequalities compound and constantly load on individuals to impact their physical and ­mental health, and their ­house­holds and communities. At the same time, as the subtitle of this series indicates, we are concerned with questions of social exclusion and inclusion, social justice and repair, again both globally and in local settings. The books ­will challenge readers not only to reflect on sickness and suffering, deficit and despair, but also on re­sis­tance and restitution—on how ­people respond to injustices and evade the fault lines that might seem to predetermine life outcomes. Although not all of the books take this direction, the aim is to widen the frame within which we conceptualize embodiment and suffering. Diabetes is considered the quin­tes­sen­tial disease of modernity, reflecting incremental shifts in urban settlement, the availability and affordability of food, changes in food preference and dietary choice, physical activity, and ge­ne­tic propensity. Worldwide, around 50 ­percent of all ­people with diabetes of any type live in the broad Asian region—­the WHO (World Health Organ­ization) regions of Southeast Asia and the Western Pacific. In 2017, seventy-­two million of ­these ­people are estimated to be living in India. Linked to this statistic, particularly in vast metropolitan centers such as Delhi, sugar-­sweetened beverages and fast foods—­ Coca-­Cola, KFC, McDonald’s, and local variations on bur­gers, fries, and pizza—­ are pervasive, hallmarks of modernity and of India’s place in a globalized world. As Lesley Jo Weaver shows, diabetes has become a “fashion” in modern India. ­People’s bodies, and their bodily pathologies, are instantiations of this. In writing of diabetes, in Sugar and Tension: Diabetes and Gender in Modern India, Weaver therefore addresses a health condition of real urgency. Once associated with wealth, indolence, rapacity, and high status, diabetes is now a disease most common among poorer ­people. With poverty, the capacity to manage diet, eat wisely, exercise, lose weight, monitor glucose levels, and adhere to medical advice is difficult, sometimes impossible. Further, diabetes is exacerbated by stress, but stress is part of the fabric of everyday life. It is also inherent in managing the condition. Diabetes demands constant monitoring, management, mindfulness, and increasingly high levels of care; without ­these mea­sures to control blood glucose, the disease can lead to catastrophic complications. And, as Weaver illus-

Foreword xi

trates, diabetes is a disease of class, age, and gender. Hence her focus particularly on ­women. Sugar and Tension takes its title from the signs, symptoms, techniques of monitoring and management, ­causes, and comorbidities of diabetes. ­These terms have been adapted from En­glish into vernacular languages and locally spoken En­glish. Local Hindi speakers refer to diabetes as “sugar” or shugar. W ­ omen with high blood sugar relate their “sugar” to “tension”—­indexing the hardships of everyday life and the demands of domesticity, of ­house­hold cooking and cleaning, the care of infants, c­ hildren, and el­derly parents-­in-­law. ­These stressors often coexist with maintaining employment or building a c­ areer, managing the experiences of deeply distressing events, and dealing with other economic, interpersonal, and social f­ actors that contribute to chronic stress. In urban Delhi, ­women are embedded in con­temporary social, po­liti­cal, and economic contexts that determine their everyday lives; t­ hese structural f­actors shape the social production and meanings of the disease. For the middle-­class ­women with whom Weaver worked—­ mostly not ­women who are desperately poor—­the limited time and resources available to them, the lack of support from o­ thers within the ­family, and the negative meanings attached to self-­care limit their capacity to deal with diabetes. Self-­ care conflicts with w ­ omen’s own and ­others’ ideas about their roles within families, and with the l­abor involved as they seek to fulfill t­ hese roles. Domestic modernity thus works against w ­ omen’s ability to care for themselves and so to control their disease. As Weaver argues, this book is not “just” about diabetes. Rather, like any health condition, diabetes is an entry point into discussions of gender relations, ­family life, individual and social values, cultural norms, expectations, and conflicts. Drawing on both postmodern and the biocultural traditions in anthropology, Sugar and Tension illustrates the ways in which modernity and illness in India collide and overlap; how “tension,” sugar, and gender norms frame ­women’s daily lives; and how structural conditions produce and change the patterns of diseases, bodies, and health inequities.

SUGAR AND TENSION

1 • OPENING A WIN­D OW ON DIABETES EXPERIENCE

Maya had seen more suffering in her thirty-­five years than many ­ omen do in a lifetime. Her husband had passed away suddenly five years earlier w from an aneurism, leaving her a w ­ idow at age thirty with two young c­ hildren. She and her husband had shared a ­house in a poor and congested area of Delhi with her parents-­in-­law, and ­after his death she had no choice but to continue living with them. The h­ ouse was located down an alley lined on ­either side by open gutters where sewage and street dogs ran ­free. ­Because the alley was so narrow, it was only accessible by bicycle or on foot. As I walked on, flies buzzed, and the alley darkened to an eerie midday dusk lit only by a thin sliver of sky above. It dead-­ ended at the ground-­floor apartment where Maya, her c­ hildren, and her in-­laws lived. The in-­laws owned the building and made their only income by renting the upper floors. I stepped gingerly around bicycles and a motorcycle crowded around the front doorway, then ducked my head as I passed through. Faded pictures of Hindu gods and goddesses, draped with dusty dried garlands of marigolds, decorated the blue walls. Maya motioned for me to sit on the cot-­turned-­sofa that was the main piece of furniture in the living room, then returned with a tray holding a glass of cold ­water. She settled herself onto a low stool facing me. Although I was very uncomfortable with this arrangement, which seated me both symbolically and physically above her, she insisted. I had met Maya at a diabetes clinic several weeks earlier, where she was accompanying her diabetic mother-­in-­law for a routine checkup. Assuming that Maya herself did not have diabetes ­because she looked so young, I asked if she might be willing to talk to me as a nondiabetic w ­ oman about her everyday life. To my surprise, she told me she was prediabetic: she had elevated blood sugar that would turn into diabetes if she did not change her diet and begin taking medi­cation. Maya had received this diagnosis four and a half years before, just a­ fter her husband’s untimely death, but she had not been checked by the doctor on the day we met, nor for any diabetes-­related care since that initial diagnosis. When I asked why, she said it would cost her in-­laws extra money, which they would hold against her. 1

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Besides, they would prob­ably suspect her of malingering to get out of ­house­hold chores. She promised me, however, that she would see him “in another two or three days.” Maya had had to ask permission from her father-­in-­law for me to visit her ­house that day. A moment ­after I arrived and sat down, her mother-­in-­law appeared in a doorway. Maya immediately covered her head with her dupatta as a sign of deference. I cheerfully introduced myself in Hindi and explained that I was visiting with Maya ­because I wanted to learn more about her health. The mother-­in-­ law did not smile back and barely responded, but hovered with her arms crossed as if to monitor what Maya was telling me. The tension was palpable. Maya knew she was an unlikely candidate for a prediabetes diagnosis based on her weight, age, and ­family history, so she looked elsewhere for explanations of her illness. She figured that the shock of her husband’s sudden death (and the stress of dealing with her in-­laws alone thereafter) must have done it. “Nobody had it in my ­family, I just had a lot of tension at that time. That’s why I got sugar,” she said. When her mother-­in-­law left the room again, she continued in a lowered voice, leaning t­ oward me, “­Family tension—­I’ll tell you now. My husband passed away five years ago. Y ­ ou’re asking me, so as a friend I am telling you this. My mother-­in-­law was ­here, so. . . . ​The tension, like you said, happens to me sometimes, but for the ­children I try to adjust.” My overall impression was that something was profoundly wrong with Maya, and it all seemed to center on her in-­laws. Maya had vis­i­ble bruises on her forearms in the shape of fingerprints, but she laughed ner­vously, looked away, and said no when I asked in a hushed voice if she was being physically abused. The dark circles ­under her eyes hinted at tiredness or perhaps anemia; she reported l­ittle appetite and often had trou­ble getting up in the morning ­because she felt faint and had severe headaches. She said that she was tormented by guilt b­ ecause her husband had died when she was away visiting her ­mother, so she was not with him at the time. The small ­house­hold offered no sisters-­in-­law or other peer ­family members with whom Maya might have commiserated about this or any of her other trou­bles. ­There was also no one to share the ­house­hold work, and Maya’s mother-­in-­law expected her to do it all. Perhaps Maya’s relationship with her in-­laws had never been particularly good; mothers-­and daughters-­in-­law often conflict in North India’s patrilocal f­ amily system, where a young w ­ oman typically moves in with her husband and his parents ­after the wedding. The younger ­woman coming into the ­house­hold is often expected to serve her mother-­in-­law and manage the h­ ouse­hold ­under her direction, and this can be difficult for both parties. Although she did not move in with them ­until ­after her first menstruation, Maya was married into the f­ amily at the age of seven.1 Maya talked very l­ ittle about the dynamics of her marital relationship, but her limited remarks suggested that the marriage had been reasonably



Opening a Win­dow on Diabetes Experience 3

happy. Her husband protected her and supported her financially, and together they had two ­children whom they both cherished. Why did Maya now stay in this unpleasant and possibly abusive living situation? As a lower-­middle-­class ­woman, she had no education that would enable her to get a job. Her f­ ather had already died, and her own impoverished m ­ other would be unable to support her and her two ­children if she moved out of her in-­laws’ home. It would have been financially burdensome and socially inappropriate for her to return to her natal ­family, and typically ­women in her situation do not elect to live alone. Moreover, if she did so, she would likely lose any claim she might have to her husband’s inheritance. So she stayed and kept ­house for her in-­laws—­essentially bartering her l­abor for her c­ hildren’s ­future security. Maya took charge of all the meal preparation and h­ ouse­hold cleaning, ­doing the tasks the way her mother-­in-­law expected. Although Maya cooked, her mother-­in-­law set the menu and did the shopping. Given ­these responsibilities and h­ ouse­hold dynamics, Maya did very l­ittle to manage her health. Her two c­ hildren did not know she had prediabetes, and she said she avoided telling ­people. Last time she went to her general doctor for a non-­diabetes-­related concern, she purposefully did not take with her the lab reports that diagnosed her as prediabetic ­because she was afraid that he might put her on insulin injections. She, like many w ­ omen in my study, dreaded this possibility ­because she believed that insulin was habit-­forming and did not like the idea of injecting herself. Maya said she went on a daily walk, but she was quick to clarify that she did this more to lift her mood than for her physical health. When I visited her home that day, Maya was participating in the Hindu Navratri (nine-­night) fast, during which she only consumed sweetened chai (tea), fruit, and milk by day, and a small dish of pumpkin with yogurt in the eve­ning. This was not agreeing with her. “The t­ hing is, I’m feeling very weak t­ hese days. The dizziness I was telling you about, it’s been happening to me in between. I’m okay ­today, but the day before yesterday I was dizzy.” Generally, ju­nior ­women in the ­house­hold perform fasts and religious observances on behalf of the ­family, so this might have been one reason why Maya persisted, despite the fact that her symptoms had worsened. This book is about the lives of a group of ­women with type 2 diabetes—or “sugar” as they called it colloquially—­who live in India’s capital, New Delhi. Most of the ­women with whom I worked w ­ ere like Maya: they w ­ ere situated somewhere in the nebulous contours of India’s urban ­middle class or lower ­middle class, ­were Hindu in their religious orientation, and did not work outside the home. Unlike Maya, most had a high school education or more and had been living with diabetes for a long time—­eight years, on average. But t­ here ­were quite a few who w ­ ere still in the pro­cess of adjusting to a new diagnosis, and a few who ­were diagnosed only

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when I tested their blood sugar and found it abnormally high (for more details about the larger study sample, see Weaver et al. 2015 and Weaver and Hadley 2011). I conducted the research for this book between 2009 and 2012, with a followup in 2016. In all, I worked with over 180 ­women with diabetes, but only a subgroup of ­women with whom I did in-­depth ethnographic work appear in this book. I also worked with about 100 ­women without diabetes who appear primarily in chapter 4 as a comparison group in my discussion of m ­ ental health. Prior to the start of my formal research in 2009, I had spent time between 2001 and 2008 studying Hindi and working in North India. The contextual background that informed my research came from this period. Even the realization that type 2 diabetes was a major health concern came not from the design of a research itself, but from having lived and worked in India previously. Type 2 diabetes is a chronic disease resulting from e­ ither a low level of insulin (a hormone secreted by the pancreas that regulates blood sugar) or from the body’s reduced response to the insulin secreted by the pancreas.2 The condition impairs the body’s ability to pro­cess the carbohydrates contained in food. As a result, ­people with diabetes often have too much or too l­ ittle sugar in their blood. Over time, organs receiving this blood become damaged, as does the circulatory system. This is one reason why diabetes is so serious: all of the body’s systems come into contact with blood, and therefore all of the body’s systems are at risk of damage from blood with abnormal sugar levels. The more frequently a person experiences abnormal sugar levels, the more quickly this damage occurs. Despite advances in public awareness about diabetes in India and advances in technologies for its management over the last twenty years, managing blood sugar is a very complicated business. Blood sugar naturally fluctuates throughout each day, even in a person without diabetes. The goal of diabetes management is to keep blood sugar as stable as pos­si­ble. For individuals with type 2 diabetes, this usually involves oral medi­cations that lower blood sugar, and sometimes injected insulin to replace or augment the insulin normally produced by the pancreas. (­People with type 1 diabetes must always inject insulin.) It also involves exercise and dietary changes that are intended to control body weight, limit intake of sugars and other carbohydrates that make blood sugar rise quickly, and help the body metabolize the carbohydrates that are ingested. A person with diabetes should check their blood sugar multiple times a day and make incremental adjustments to their medi­cation dosage, food consumption, and activity to keep it as stable as pos­si­ble. Even when a person with diabetes manages their blood sugar vigilantly, they sometimes experience abnormal levels, often too high (hyperglycemia), but sometimes too low (hypoglycemia). Likely, Maya’s headaches and weakness w ­ ere symptoms of hypoglycemia she was experiencing during her fast, but I could not know for sure ­because she was not mea­sur­ing her blood sugar, nor was she taking any medi­cation for it. Unlike p­ eople with high blood pressure or high cholesterol, who can take their daily medi­cation and go



Opening a Win­dow on Diabetes Experience 5

about their business, ­people with diabetes are never allowed to forget—­even for an hour—­that they have the disease. Precise management of diabetes requires intensive and continuous self-­care, and most ­women in my study, like Maya, did not do this. Studying how and why ­women made choices about prioritizing diabetes (or not) ended up teaching me all kinds of t­ hings about how w ­ omen in this context order the broader priorities in their lives. I take as an analytic starting point the observation that in this cultural context, ­women like Maya are strongly socialized t­ oward the care of o­ thers. This creates a paradox for the self-­care demands of diabetes. Throughout the book, I examine questions such as: What do ­women in a situation like Maya’s do when they get diabetes? Whose well-­being gets prioritized? What does “care” look like when ­women give it to their families, and when they enact it for themselves? What if self-­care is not a relevant category at all for ­women like Maya? Such questions about how w ­ omen in North India negotiate self-­and other-­ care are especially timely, given current public debates around w ­ omen’s changing economic and social positions in the country, and about their rights and roles in public spaces. Just a­ fter this research took place, in 2012, the city of New Delhi acquired a central geographic and ideological position in ­these debates, when a twenty-­three-­year-­old female physiotherapy intern known pseudonymously as Nirbhaya was brutally gang-­raped and murdered on a moving off-­duty public bus when she was out late one eve­ning with a male friend. Indian law prohibits public media from reporting the names of rape victims ­because rape is highly stigmatizing. Nirbhaya means “fearless” in Hindi and was a moniker chosen specifically to restore dignity to the w ­ oman ­violated by this crime. Mohan Rao Bhagwat, the head of the conservative Hindu nationalist group Rashtriya Swayamsevak Sangh (RSS), publicly commented that “such crimes hardly take place in ‘Bharat’ but occur frequently in ‘India’ ” (Times News Network 2013). By this he meant that sexual vio­lence against ­women is not part of Bharat (the ancient Sanskrit word for India)—­the traditional, principled, idyllic (and, notably, Hindu) nation—­ but rather is a product of the modern, corrupt India. W ­ omen’s “provocative” be­hav­ior—­such as wearing supposedly titillating Western-­style clothing, being out at night, or worse yet, being out at night with men who are not their relatives, as Nirbhaya was—is offered ­here as evidence of India’s moral disintegration. Nirbhaya’s death, and the victim-­blaming response to it from ­people like Bhagwat, led to massive protests against the government’s inability (or, some said, unwillingness) to provide adequate public safety for w ­ omen and to respond appropriately to sexual vio­lence. New Delhi was at the center of ­these protests, which eventually spread nationwide. Just before the Nirbhaya case, New Delhi had hosted its first Slut Walk, a protest march that was part of an ongoing transnational movement to end rape culture. But in 2014, another widely covered spate of sexual crimes against Delhi w ­ omen involving five rapes in u­ nder twenty-­four hours led newspapers to dub New Delhi India’s “rape capital” (Rukmini 2015).

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At the core, ­these public discussions in urban India reflect broader discomfort with new versions of ­women’s gendered positions that straddle two very dif­fer­ ent visions of the nation. The Nirbhaya protests, and the accompanying media and lay discussions, questioned the prevailing idea that w ­ omen can only be safe in India if they follow religious and socially conservative norms that keep them confined to the domestic sphere. Although none of the ­women with whom I worked ­were part of the Slut Walk (or anywhere near it, in fact, as this kind of activity was largely the purview of the liberal elite intelligent­sia, who ­were not part of my research group), many w ­ omen in my study also described feeling as if they ­were caught between the “two Indias” that Bhagwat so problematically referenced. For them, the conflict was less often about ­going out at night safely and more often about the degree to which they could or should maintain fidelity to domestic norms of ser­vice enshrined in ideas about Bharat. ­Women experienced internal conflict, as well as external criticism, if they ­were unable to uphold what was perceived to be the “traditional” w ­ oman’s responsibility of caring for o­ thers in the domestic sphere. Most of t­ hese ­women believed other-­care activities to be of the utmost importance, and, like Maya during the Navratri fast, they went to g­ reat lengths to uphold them to what­ever extent they could. Given this rather fraught cultural context around ­women’s changing roles in urban Indian spaces, type 2 diabetes is a compelling way to think about gender, health, care, and modernity. Self-­care has impor­tant gendered inflections all over the world, but perhaps especially in India, where cultural forms and ancient Vedic texts have historically emphasized an ideology of feminine virtue stemming directly from ­women’s domestic care of ­others. Diabetes is a point of entry for exploring larger questions about how ­women grapple with, adapt to, and modify the norms that orient them t­oward self-­sacrifice. ­These questions mirror larger debates ­going on in India right now about how w ­ omen ­ought to be acting as public citizens and domestic man­ag­ers. Even in its etiology, biomedicine closely associates type 2 diabetes with modernity, urbanness, and the emergence of global capitalism. As early as the 1970s, the disease was portrayed in the medical and epidemiological lit­er­a­ture as a “disease of modernity” (Omran 1971)—­that is, as an illness characteristic of modern, urban lifestyles involving lack of physical work, consumption of pro­cessed foods, and stress (Wiedman 2010, 2012). This is ­because the decreased insulin response that is the hallmark of type 2 diabetes often comes about as a result of overweight and obesity. And overweight and obesity are, of course, related to the structures and rhythms of modern, urban life. New Delhi and its lifestyle constraints in some ways set ­people up for chronic, noncommunicable diseases. The city’s per capita income is three times the national average (India Brand Equity Foundation 2017), meaning that ­people have more disposable income ­here than in many other parts of the country. The sprawl of the city (resulting in a relative dearth of sidewalks), the intense pollution, and the



Opening a Win­dow on Diabetes Experience 7

dangerous traffic mean that ­people rely almost exclusively on mechanized transportation if they can afford it. As they do in many other parts of the world, ­people in New Delhi live more sedentary lifestyles than they once did, and certainly more than ­people in rural India do. As one rural-­to-­urban mi­grant ­woman explained to me, “Before, I used to live in a village, but since coming to the city I d­ on’t work [physically] like I did ­there. [­Here] I stay sitting in one place making bindis [adhesive decorations worn on the forehead], and sometimes I get gas from sitting so much. Maybe for this reason [I got diabetes].” Gyms are increasingly cropping up around the city to accommodate ­people’s growing interest in exercise for health and thinness, but they are available only to the elite ­because they are very expensive. This straightforward explanation for diabetes centered on food, money, and sedentary lifestyles has been justifiably critiqued for being overly simplistic and placing too much onus of the responsibility on individuals (see, for an example, Guthman 2011). However, most biomedical diabetes research in India uncritically assumes that individuals who make poor health choices in urban environments are the primary agents responsible for the increase in the disease (Chadha, Gopinath, and Shekawat 1997; Ebrahim et al. 2010; Ramachandran et al. 2008; Shetty 2002). ­There is very ­little consideration of the structural forces outside individual control that promote diabetes, such as aggressive marketing of pro­cessed foods, built environments that make exercise difficult or dangerous, and social inequity that places some ­people at higher risk of diabetes than ­others. Food is a particularly obvious site where national policy and personal choice intersect in con­temporary India, and one that m ­ atters profoundly for diabetes ­because control of food intake is a cornerstone of diabetes management. In the 1970s and 1980s, following several devastating famines, the Indian government embraced Green Revolution technologies such as high-­yield va­ri­e­ties of rice and wheat and chemical fertilizers, with their promise of increased per-­capita calorie production. The liberalization of India’s economy in 1991 combined with the emergence of concentrated wealth in urban centers saw a marked increase in milk and animal-­product consumption (although not beef, b­ ecause India’s Hindu majority vociferously protests the slaughter or consumption of the cow, which is considered sacred in the religion) and a decrease in cereal and pulse consumption. This resulted in diets higher in fat and protein and lower in fiber and plant foods (Griffiths and Bentley 2001). It also ushered in a new wave of snacks and fast foods. In 1996, McDonald’s opened its first restaurant in India, in New Delhi. The now ubiquitous Kurkure corn puffs ­were introduced in 1999. Frito-­Lay arrived in 1995. Domestically produced meal components designed to save time, such as prepackaged spice mixes that contain flavor enhancers and preservatives, have also become increasingly commonplace in recent de­cades. In public health, the word transition is often used to describe ­these kinds of population-­level changes in nutrition, demographics, and disease patterns that

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come along with integration into the global economy (e.g., Caldwell 2006; Griffiths and Bentley 2001; Popkin 2002; Omran 1971). The model is usually a linear one, where less developed countries transition in a single direction ­toward diseases and lifestyles characteristic of more developed countries. This is, of course, an oversimplification, and t­ here are alternative explanations (Guthman 2011; Defo 2014). In India, anthropologist Harris Solomon (2016) has written eloquently about the idea of absorption as a metonym for understanding diabetes among p­ eople in Mumbai. He describes the absorption of food, environment, and substances across bodily bound­aries as a complex, nonlinear modality tying together economic liberalization and chronic disease epidemics. Solomon’s argument is compelling ­because it complicates the often-­taken-­for-­ granted bound­aries between body, economy, and environment, but it had ­little traction in the lives of the ­women with whom I worked: none used terms like absorption to describe their own ideas about diabetes. None used the word transition ­either, but they often drew on explic­itly modern connotations of diabetes; some even claimed that having diabetes had become a “fashion” in rarified social circles, an embodied marker of modernity and some forms of economic and social success. “Nowadays every­one has diabetes; it’s become some kind of fashion. ­Those who ­don’t have it are out of fashion!” exclaimed one of the ­women in my study, only half jokingly. “In the morning when I go for a walk, eight out of ten ladies [at the park] have diabetes. We tell each other to do this, do that, eat this, eat that,” another remarked. In this way, diabetes is not just a product of structural change like that reflected in epidemiological work on “transitions,” nor is it only a meta­phor for the embodiment of urban modernity; it is also about social class, and sometimes even about signaling that you are someone whose body has taken on modernity to such an extent that it’s in “fashion.” Type 2 diabetes is, as the w ­ oman above suggested, remarkably common in urban India. In 2011, the year in which most of the research for this book took place, India held the dubious distinction of being not only the world’s second most populous country but also its “diabetes capital” according to the International Diabetes Federation, the global umbrella organ­ization that brings together national diabetes associations (International Diabetes Federation 2011). Although that distinction has now gone to China, the International Diabetes Federation predicts that by the year 2045 India w ­ ill once again outcompete the rest of the world as the country with the greatest number of p­ eople with diabetes. At the time of this writing, the countrywide prevalence of diabetes in India was estimated to be around 10 ­percent, amounting to around seventy-­four million individuals, with another forty-­two million undiagnosed (International Diabetes Federation 2017). Half of ­these individuals are ­women. The medical lit­er­a­ture generally agrees that ­people of South Asian origin are biologically more predisposed to type 2 diabetes than many other groups in the world. Research on the developmental origins of health and disease, or DOHaD,



Opening a Win­dow on Diabetes Experience 9

has demonstrated that many adult metabolic disorders like type 2 diabetes can be traced to stressors their ­mothers endure while pregnant, which exert lasting metabolic changes in infants that persist throughout their lives (Drake and Walker 2004; Gillman 2005). In India and elsewhere, ­these effects on metabolism appear to be caused in part by suboptimal maternal nutritional status (Barker 2007; Gademan et al. 2014; Yajnik 2004), as in cases where gestational diabetes increases the risk to both a ­woman and her child of eventually developing type 2 diabetes (Ruchat et al. 2013). As a result of t­ hese vari­ous ­factors (and ­others that we do not yet understand), South Asians tend to have a higher fat-­to-­muscle ratio than populations in some other parts of the world (Yajnik et al. 2003; Yajnik 2004). They therefore tend to develop weight-­related diseases like diabetes and hypertension at lower body weights. The World Health Organ­ization in 2004 developed alternative body mass index guidelines specifically for South Asians (World Health Organ­ization 2004). This biological predisposition, combined with changing lifestyles and diets, has been sufficient to tip the scales ­toward a veritable epidemic of diabetes in India at pres­ent. Access to specialized biomedical care for diabetes is challenging for most in India. Endocrinologists (specialists who focus on the endocrine or hormonal system and often treat ­people with diabetes) and diabetologists (specialists in diabetes, who are often trained as endocrinologists but narrow their focus) are very few in India. In 2012, the country had just one biomedical physician per 1,800 ­people, only a small minority of which ­were specialists in diabetes or endocrinology (Deo 2013). As a result, the vast majority of p­ eople with diabetes in India who get biomedical care do so from a primary care physician. Many o­ thers do not seek or get biomedical care, but rely on other medical systems altogether. We should therefore be skeptical of prevalence estimates of diabetes in India ­because ­there are likely many ­people with diabetes in India who do not know they have it, and b­ ecause infrastructural limitations and a very large population make the collection of truly representative statistics almost impossible. Perhaps this is a better metric for conveying how common diabetes is: in my years of work across North India since 2001, almost every­one I have met has at least heard of diabetes. Nearly every­one had a friend, neighbor, or relative with “sugar,” if they did not have it themselves.

Learning to Be Diabetic in Delhi “Before this clinic ­today I got my [blood] tests done at the lab. Actually, I normally do my tests a l­ittle less, but the last month or two I’ve started testing it a ­little more b­ ecause I’m taking a dif­fer­ent medicine, so I have to check my sugar all day long—­before eating and ­after eating.” The speaker ­here was Chanda, a sixty-­ year-­old ­woman who had been diagnosed with diabetes four and a half years

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prior to when we met. Chanda, who had only a few years of formal schooling, was remarkably proficient in interpreting her blood sugar and managing it through a combination of Ayurvedic treatments and food regulation. “My sugar goes up and down a lot, but I ­don’t feel it. I only know it’s happening when I get a test. It’s okay, but sometimes if it’s high it goes up, like a few days back it went up to 250.” I checked it for her. “Now it’s 170? But I totally watch my diet.” The numbers Chanda was referring to h­ ere ­were her blood sugar levels, which w ­ ere fluctuating—as high as 250 mg/dL ten days ago, but 170 mg/dL when I mea­sured it at that moment using a finger-­stick blood test. The latter number is a completely reasonable blood sugar level for someone with diabetes who has eaten recently. This and her other tests suggested that her blood sugar was somewhat controlled, despite the fact that she was not ­doing what her biomedical diabetes doctor told her to do but relying instead on Ayurveda. “I ­didn’t eat ashwagandha3 leaves ­today, but I usually have them e­ very day ­these days. When I found out a week or ten days ago that my sugar was 250, then I started taking them ­every day. When I got a test done ­here, it was 125. So a­ fter that, I ate a l­ ittle sweets, and my sugar went up. Sometimes if sweets come to the ­house, I take a ­little. Other­wise I ­really watch my diet. I ­really watch my diet, but sometimes it comes out high, like just the other day it was 250.” Chanda’s comments h­ ere captured the ups and downs of diabetes management, and the complexities of figuring out what to change when it goes awry. Not vis­i­ble in this discussion is the significant work Chanda had done in the previous four years to get to the point of being able to interpret and respond to her blood sugar values as deftly as she did ­here. Imagine that you have just been to the doctor for a routine visit, perhaps precipitated by a tingling in your toes or itchy skin, as was the case for Chanda when she was first diagnosed with diabetes. A blood test reveals elevated glucose levels. Chanda recalled that hers ­were 400 mg/dL when she was diagnosed, and she had glycosuria (sugar in her urine, a symptom of high blood sugar). You might, like Chanda did at the time, have no idea what this means. What is a good number h­ ere? What is a bad number? What makes it change? If you can play along with this exercise, you are now in the mindset of most ­people when they are first diagnosed with diabetes. Like you, most of them start from the ground. They have to learn to interpret numbers whose meaning they have never considered before: blood glucose, glycated hemoglobin, urine ketones, urine albumin-­to-­creatinine ratio, medi­cation dosages, and more. If this sounds overwhelming, then you are on the right track. It is. In this section I briefly sketch out the methods of the study, and I describe the significance of the quantitative diabetes mea­sures that Chanda brought up in her statement (and some ­others she did not mention). The pro­cess of learning about ­these mea­sures is exactly what ­people with newly diagnosed diabetes must go through, so I encourage readers to persevere even if the material seems challenging or foreign. Th ­ ese mea­sures ­w ill reappear at vari­ous points throughout the



Opening a Win­dow on Diabetes Experience 11

book, and the explanation in this chapter w ­ ill be necessary for helping most p­ eople interpret them when they come up. The study included clinic-­based interviews, with questionnaires and blood tests, of 180 ­women with diabetes, as well as a phase of follow-up interviews where my research assistant and I spent time at home with a subset of 30 w ­ omen; this is the phase of the work in which the majority of the ethnography in this book was done. Each week, Monday through Saturday, my local research assistant and I would visit one or two clinics and interview ­women patients as they waited to see the physician. The w ­ omen with whom I worked comprised what is called a con­ve­nience sample: I interviewed whoever came in the door and was willing and able to talk with me, as long as they w ­ ere over eigh­teen and w ­ ere not suffering from another endocrine condition. In ­these interviews I asked about ­women’s everyday lives, their personal backgrounds, and their daily activities. I also assessed depression and anxiety symptoms. ­Because biomedical knowledge holds such a central place in diabetes management, a­ fter interviewing the w ­ omen I conducted several body mea­sure­ments to collect biomedical information that doctors typically use to assess ­women’s health. ­These included body mass index (BMI), body fat ­percent, and waist-­to-­hip ratio. Problematic as some of ­these mea­sures are—­ especially BMI, b­ ecause it tells us nothing about a person’s ratio of lean body mass to fat body mass—­they are routinely used in medical practice and public health work, so I incorporated them. I used ­these body metrics to assess ­whether ­people ­were overweight or not, but they appear very ­little in this book. I then performed a few blood tests using blood from a finger-­stick. The first one, referred to as random blood glucose, is simply a person’s blood sugar at the moment of the mea­sure­ment, and it can be somewhat hard to interpret b­ ecause every­one’s blood sugar fluctuates throughout the day, even if they do not have diabetes. For this reason, p­ eople with diabetes are usually asked to test their blood sugar in the morning before they have eaten anything, but this was not pos­si­ble in my study. Besides, ­there is some evidence suggesting that random blood glucose can give a rough idea of diabetes status—­after all, someone with good diabetes control is less likely to have very high random blood glucose, even if they have just eaten a meal, compared with someone with poor diabetes control. This was the mea­sure Chanda was referring to when she mentioned that her sugar was 250, then 170. The second mea­sure of diabetes control I used was glycated hemoglobin (abbreviated HbA1c). Glycated hemoglobin is the main index physicians use to judge a person’s overall diabetes control. It is simply a mea­sure of how many hemoglobin molecules (the main constituents of red blood cells) have a glucose molecule attached to them. A lower glycated hemoglobin level indicates that a person’s blood sugar has been relatively well controlled in the past two or three months; a higher level indicates that a person’s blood sugar has been fluctuating more than it should. This test is available in India, but at the time of the research

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it cost anywhere between 500 and 1,200 rupees—or 10 to 24 U.S. dollars using 2011 conversion rates—so it was a “perk” of the research that participants could get this test ­free of charge. When I did t­ hese blood tests, I collected two additional drops of blood on filter paper to assess levels of C-­reactive protein and Epstein-­Barr virus antibodies, indicators of overall cardiovascular risk and immune stress, respectively. Th ­ ese ­were not clinically impor­tant for ­women’s diabetes control, so they are a bit more difficult to interpret. When they appear in this book, I explain their significance and interpretation in footnotes. The blood sugar and glycated hemoglobin tests ­were impor­tant ­because the diabetes physicians I worked with uniformly judged their patients’ control according to the American Diabetes Association’s (2001) recommendations for blood sugar management, which state that glucose should remain between a low of 70 mg/dL before a meal and a high of 180 mg/dL a­ fter a meal, and overall glycated hemoglobin should be 7 ­percent or below to prevent complications that can affect the eyes, kidneys, and nerves (Crofford, Genuth, and Baker 1987). In Chanda’s case, a blood glucose level of 250  mg/dL, which she had recently experienced, was too high. The 170 mg/dL I detected when I tested her blood her was within normal bound­aries, however. Chanda’s glycated hemoglobin was only 5.9 ­percent—­remarkably low for someone taking no phar­ma­ceu­ti­cals to control blood sugar, and a testament to the effectiveness of her dietary control and ashwaganda Ayurvedic medicine. ­These globally accepted diabetes-­management standards are easiest to maintain when individuals regularly monitor their blood sugar at home (as Chanda said she did), but they are predicated on the assumption that ­people have access to the technology to do so. In the United States, for example, individuals with diabetes are instructed to monitor their glucose multiple times e­ very day. In India, only a handful of ­women I met actually owned a glucometer, much less had access to a steady supply of the expensive disposable strips used to collect blood in the machine. The reliance in the United States and other Western countries on frequent blood glucose mea­sure­ments is not even a possibility for most w ­ omen in India, so the American Diabetes Association’s recommendations for diabetes control reflect a Western bias in their tacit assumptions about access to care and technology. Chanda was certainly an exception to the norm among w ­ omen in my study, most of whom rarely tested their blood sugar. Chanda was also an exception in terms of her glycated hemoglobin of 5.9 ­percent. In my study, the average glycated hemoglobin among w ­ omen with diabetes was 8.5 ­percent, higher than it should be according to the ADA’s ideal cutoff of 7 ­percent. Only about 30 ­percent of them had glycated hemoglobin at or below the 7 ­percent mark. This was true despite the fact that almost 30 ­percent of the ­women with diabetes ­were on injectable insulin therapy, which is often an effective way of bringing down high glycated hemoglobin.



Opening a Win­dow on Diabetes Experience 13

Like Chanda and Maya, many ­people ­were scared of the possibility of having to take insulin, and sometimes this led them to conceal or downplay diabetes prob­lems. They viewed insulin as an irreversible and dependency-­creating last resort, and as a result they ­were often willing to accept the possibility of greater diabetes complications or more symptomatic discomfort to avoid starting insulin therapy. One w ­ oman who had been told by her doctor that she should consider starting insulin on the day I interviewed her told me, “I got scared when this insulin ­thing happened [just now]. I thought that I would become a slave to the medicine. Tablets are easy; no one has to think about them. But insulin—­every day you have to take it, prick yourself.” Stefan Ecks (2014), a medical anthropologist who studies phar­ma­ceu­ti­cal use in North India, also discusses at length how Indians are concerned with the potential dependence associated with Western medicines, even ­those that are not physiologically addictive. With oral medi­cations and sometimes with insulin, ­people with type 2 diabetes can lead relatively normal lives. But relative normalcy comes at a price. Chris Feudtner, a medical historian, asks, “How should we think or feel about a remarkable medical achievement”—­and ­here he is referring to blood sugar–­controlling medi­cations—­“that gives with one hand and, years l­ater, takes away with the other?” (2003, 195). Diabetes interventions like blood sugar medi­cations prolong life, but they come at a high price of everyday stress and, for most p­ eople, eventual later-­life complications anyway. Implicated ­here are questions about whose priorities (physicians’ or patients’?) o­ ught to m ­ atter most in long-­term diabetes management. Also implicated h­ ere is the concept of control and its associated moral judgments of “good” versus “bad” be­hav­ior in terms of diet choices, time management, exercise, and blood sugar itself. Choices to follow or shirk one’s diabetic diet, exercise or not, take medicines or not: t­hese are not morally neutral scenarios, but rather are imbued with the hidden morality of choice inherent in biomedicine (Guthman 2011). Strategies for diabetes management are therefore not as straightforward as they might sound. Although we know quite a lot about the physiology of diabetes—­ reduced or absent insulin response leading to abnormal blood sugar levels—­the ­women in my study and their doctors ­were correct when they said that nobody knows exactly what ­causes it in any one person. Ultimately, type 2 diabetes is the result of a complex combination of ge­ne­tic predisposition, epigenet­ics acting through early-­life exposure to undernutrition or other adversity that triggers the body to store more fat, dietary patterns, activity levels, and o­ thers. Given ­these many influences, it is nearly impossible to pinpoint a single “cause” of an individual’s diabetes, and it is not necessarily useful to attempt to do so. The pro­cess is usually irreversible; t­ here is no cure for diabetes. Good management of diabetes postdiagnosis is, therefore, the goal upon which most doctors and patients focus their energies.

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The Setting: Public and Private Medical Systems in New Delhi It would not have been particularly difficult, given the sheer number of p­ eople with diabetes in Delhi, to find individuals for the study in a casual, unstructured manner. However, time is often in short supply during research. B ­ ecause ­women with diabetes in New Delhi are a dispersed group, I deci­ded to look for them in the one place they might all go: medical clinics catering to diabetes. I worked in ten clinics overall. All the physicians involved in my study ­were se­nior con­sul­tants at public and private hospitals in Delhi and belonged to an organ­ization called the Research Society for the Study of Diabetes in India (RSSDI). Through my Indian fieldwork supervisor, a physician and professor who at the time was president of RSSDI, I identified physicians who would be willing to let me interview patients in their clinics. All ten physicians with whom I worked had completed their medical training before or during the mid-1980s. Many had specialized in cardiology during their training, the only medical specialization available in India at the time, but gradually shifted their practices ­toward endocrinology or what they referred to as “cardio-­diabetes” through continuing education, residency programs, fellowships abroad, and clinical experience. All but one of them w ­ ere men. This paucity of ­women in endocrinology is representative of larger dynamics: from a list of the 274 members of RSSDI, only 24 (9 ­percent) had names that clearly marked them as female. Working through RSSDI was con­ve­nient, but it created blind spots in my research ­because not all ­women with diabetes in New Delhi seek the care of such providers. ­Those who do are prob­ably more biomedically oriented, more proactive about their health, and wealthier than t­ hose who do not seek biomedical care. This book engages primarily with the biomedical system in India, but readers should keep in mind that t­ here are robust nonbiomedical systems in India too. Nonbiomedical healthcare providers are much more widely available, especially for stigmatized health concerns such as ­mental health prob­lems, and ­especially in rural India where ­there are virtually no endocrinologists, psychiatrists, or other specialized biomedical providers. Ayurveda, Unani, homeopathy, and faith healing are some of the most common nonbiomedical systems. Th ­ ese providers frequently offer effective treatments for both physical and ­mental health concerns (though the distinction between physical and m ­ ental health is usually not so sharp in t­ hese systems). In many cases, nonbiomedical providers link up directly with biomedical providers, referring their patients when needed (Joyce B. Flueckiger, pers. comm. 2012). In short, a lack of biomedical providers does not mean a total lack of healthcare providers. Nonbiomedical systems thrive in India in parallel with the biomedical system that is the focus of this book.



Opening a Win­dow on Diabetes Experience 15

figure 1.1 Map of New Delhi showing locations of the clinics in which I worked.

India’s biomedical healthcare system consists of dual public and private sectors, and I worked in both of ­these. Of the ten clinics in which I worked, five ­were physicians’ private clinics run out of their homes, one was a public hospital, one was a private research-­oriented hospital, and three ­were charitable clinics staffed by volunteer physicians, which ­were typically open only once or twice per month and ­were ­housed in temporary locations like t­ emples or community centers (see figure 1.1). The disparity between conditions at the public and private clinics was remarkable. ­Every time I visited the public hospital that served as one of my research

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sites, I braced myself for a long, hot day sitting for hours in dark hallways with bare, flickering fluo­rescent tubes and unpleasant smells. So did the ­people who came ­there for treatment. “My biggest source of ghabrahat [ner­vous­ness, anxiety] is the time it takes to come ­here,” commented one ­woman with diabetes at that hospital, when I asked her about stress in her life. “Fifteen or twenty days ago I started feeling tension that I ­will have to go to the hospital, I w ­ ill have to go to the hospital. I get a lot of tension in my brain about how long the lines w ­ ill be, then I have to see the doctor. It gives me tension.” Another ­woman complained that ­people ­were always pushing and shoving to get ahead in the long lines to see the doctor or get a prescription. “Even ­today in the line waiting for medicines, ­there was one lady who was fighting with the staff. She got all sweaty fighting with them and then had to go get a new number and stand in line again!” she said, laughing at the sheer absurdity of it all. Evidence of strug­gle permeated the public hospital. To even get into the part of the hospital where the diabetes physician saw patients, I often had to push my way through crowds of ­people, some of whom ­were injured or acutely ill. Images of ­people with bloody ban­dages lying on bent steel stretchers, ­others stretched out on the hard concrete floor, are indelibly e­ tched into my memory. I also remember seeing a lot of p­ eople making do: a man limping along, using an upturned hockey stick as a makeshift cane, a w ­ oman who had repaired her broken rubber sandal with a plastic grocery bag threaded through the sole like a rope. Not ­every public hospital is as crowded and poorly resourced as the one where I worked, which was located in the most densely populated sector of Delhi, its northeastern edge. This meant that the hospital catered to the urban poor who lived in that area, but also to rural ­people coming for health emergencies. Any Indian citizen is eligible for f­ ree or low-­cost treatment at government hospitals like this one. The general lack of resources, interminable waiting times, and extreme overcrowding in t­ hese hospitals make them an unattractive option for anyone who can afford to go elsewhere, however. Even t­ hose in my study who belonged to the lower portions of the ­middle socioeconomic class, such as Maya and her ­family, generally went to private doctors to avoid the crowding and lack of comfort at public hospitals. Th ­ ese public facilities w ­ ere, most often, left to the poor and the truly destitute. The physicians working in public hospitals ­were as talented, if not more so, as ­those who worked in the private sector. But ­because their burden of patients was so heavy, most had inadequate time to spend educating each patient about the ­causes and complications associated with an illness as multifaceted as diabetes, so their patients strug­gled more. One diabetes physician who worked mainly in his own private clinic but volunteered twice a week at a rural medical center on the outskirts of Delhi complained, “­There’s just no time. I have to see seventy patients in two hours, so t­ here are only two or three minutes for a patient. What to do? If I take too much time, the outside p­ eople ­will start shouting. Pressure!—­



Opening a Win­dow on Diabetes Experience 17

And you have to deliver. You have to work within your means and circumstances.” Only the ­women attending the private clinics, where consultations cost up to 1,200 rupees (about 25 U.S. dollars at the time of the research, and sixty times the cost of a consultation at a charitable clinic), got more than a few minutes to consult with their physicians. ­There was usually l­ittle or no access to dieticians, physiotherapists, and diabetes educators at the charitable and government-­ subsidized clinics. The hospitals w ­ ere so stripped for resources that f­amily members of ill patients had to go out to pharmacies (which, unsurprisingly, cluster around them) to buy every­thing patients need—­saline drips for intravenous rehydration, ban­dages, ibuprofen, IV antibiotics. The difference in clinic conditions and access to resources was both a reflection of and a reification of stark differences in the life conditions between India’s wealthy elite and its urban poor. The charitable clinics ­were small, pop-up operations set in nonclinic spaces, such as the courtyard of a ­temple or the home of a Good Samaritan wishing to give back to their community, and thus they did not look very “clinical” at all. They too largely served the poor, but middle-­class ­people living nearby sometimes made their way into ­these spaces as well. The clinics consisted of plastic chairs, a small ­table for the physician, a large cardboard box or cabinet containing medi­cation samples supplied by phar­ma­ceu­ti­cal com­pany representatives, and some very basic medical equipment such as a scale and a stethoscope. In one case the clinic was hosted in a wealthy person’s living room; patients and doctors w ­ ere scattered around on couches and the dining t­ able. Doctors and their assistants brought along their own glucometers to mea­sure their patients’ blood sugar, and donations from wealthy benefactors or phar­ma­ceu­ti­cal companies paid for the expensive test strips needed to use ­these instruments. Some of the volunteer clinics collected nominal consultation fees that helped cover the cost of materials and the pay for a receptionist. B ­ ecause the doctor volunteered their time in t­ hese charitable spaces, their presence in ­these clinics was erratic, and ­there was no mechanism in place to notify patients of changes in clinic schedules. Patients often waited for hours during the time when a physician was supposed to be at a charitable clinic, only to find that he had gone on vacation that week. Th ­ ose who came for diabetes w ­ ere lucky to catch the doctor in his office, and when they did so, they could expect to receive a very brief physical exam (or sometimes no physical exam at all, but just a verbal exchange about symptoms), a written prescription, and f­ ree or low-­cost oral medi­cations fished out of the boxes of samples. Th ­ ere ­were virtually no discussions between patients and doctors about the ­causes of illness, the purpose of vari­ous medi­cations, or larger questions of day-­to-­day management of diabetes. Public or charitable facilities like ­these generally fall short in keeping track of patients ­because at the time of my work they had no electronic rec­ords systems. The private clinics and hospitals, by contrast, occupied permanent spaces devoted specifically to clinical purposes, with sturdy furniture such as couches, exam ­tables, and large cabinets. The exterior of one of the private hospitals in

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which I worked was scrubbed ­every Sunday, diminutive men teetering on bamboo ladders to reach the highest parts of the building with their soapy push brooms. The shiny floors ­were made of marble tiles. The furniture was modern, ­simple, and matched, and the patient check-in area had a large flat-­screen TV on ­either side of the front desk. The grounds comprised professionally maintained gardens and landscaping. Such clinic spaces typically had multiple rooms, with separate consultation chambers for each doctor and medical worker. For patients admitted to ­these hospitals, ­there ­were private rooms with in-­room meals, fresh linens, and all medi­cations and medical supplies available on-­site. Some of the smaller private clinics ­were run out of spare rooms in physicians’ homes in the eve­nings. The private clinics—­even the smaller operations—­typically had a se­nior physician assisted by a dietician, a diabetes educator, and in one case a physical therapist who demonstrated exercises to patients. Waiting areas ­were air conditioned, comfortable, and stylishly decorated with colorful pictures on the walls, flowers on end ­tables, and a se­lection of magazines and brochures scattered artfully around. In ­these private clinics, doctors had the luxury of spending fifteen minutes or more with each patient; they wrote complicated prescriptions not just consisting of medi­cations for diabetes but also outlining dietary modifications and exercise instructions. The private facilities projected a sense of desirability with their pleasant decor and high price tags, but it is questionable if patients actually receive better medical care in private settings. Well-­known physicians practice in both private and public sectors in Delhi. A medical resident with whom I became friends could have gone anywhere in Delhi to deliver her baby, but she chose the public hospital where she worked precisely ­because of the world-­class obstetricians who would treat her high-­risk pregnancy t­ here. Conversely, when I was checked into an expensive private hospital for an acute kidney infection during the pregnancy I carried through my fieldwork, the physician gave me antibiotics that are quite dangerous for pregnant ­women. My obstetrician, who did not oversee this care, was furious at this negligence. Sunita, whose story appears in chapter 6, stood by while her husband nearly died in a private hospital from overly aggressive treatment for a minor arterial blockage; that m ­ istake, which almost killed him, cost them hundreds of thousands of rupees in treatment to repair the damage.

Key Themes and Plan of the Book New Delhi is a dynamic city of shifting gender, caste, and class identities apart from any concern around chronic diseases like diabetes (Dasgupta 2014; Fernandes 2006; Hiro 2015; Radhakrishnan 2011). But if we add in the lifestyle and economic changes that are also taking place, diabetes becomes a fascinating lens for considering how gender, modernity, and health intersect. Are the modern, po­liti­cally active ­women who participate in Slut Walks snacking on foods that have



Opening a Win­dow on Diabetes Experience 19

come along with social change in India, such as McDonald’s? Is Maya? Not necessarily, but even so, the concurrent rise in diabetes, sedentary lifestyles, pro­cessed foods, and new social roles for ­women is not coincidental; all are related to economic and po­liti­cal changes in con­temporary India. Exploring t­ hese linkages is one of the key purposes of this book. Maya’s case illustrates several additional themes that ­will be carried throughout the coming chapters. First, she, and e­ very other w ­ oman in this book, is living at the intersection of complex historical and po­liti­cal trajectories that have created the nebulous entity that is modern India (however we might define it). Maya and her ­family operate within cultural, socioeconomic, and po­liti­cal bound­aries that are largely not of their own making but that nevertheless insinuate themselves into even the most intimate of f­ amily spaces. In chapter 2, I set the stage for this analy­ sis by introducing readers to some of the features that define “modern India.” In chapter 3, I move into a discussion of how structural, social, and personal features of ­women’s lives differentially shape their experiences with diabetes. ­Today, biomedical diabetes control in India is intertwined with Western liberal philosophies of personhood that emphasize self-­improvement and the l­ abor theory of ­human value. Work is tied perversely to both wellness and reward. This association remains, despite the fact that the amount of work one puts into diabetes management does not necessarily correspond to health outcomes. Instead, structural and interpersonal ­factors can tip the balance of well-­being in one way or another. This analytic approach is aligned with the long tradition in medical anthropology of critically identifying the f­actors both inside and outside individual control that shape the degree to which individuals are likely to get sick, and, if so, the degree to which they may or may not be able to manage or cure their illness. Emerging in the 1980s (Baer, Singer, and Johnsen 1983), the critical tradition in medical anthropology focuses on the staggering health inequities we see in many parts of the world and in certain populations, including in Haiti (Farmer 2001), among United States army veterans (Finley 2011), in Brazilian shanty towns (Scheper-­Hughes 1993), among slum-­dwelling ­women in India (Snell-­Rood 2015a), and among Puerto Rican immigrants in the United States (Singer 1996), to name a few. Collectively, ­these studies emphasize how social, historical, and po­liti­cal forces create systematic social disadvantage that subjugates some bodies at the expense of ­others. This critical approach is crucial to understanding the social production of disease, the social meaning of diseases, and the limits of popu­ lar conceptions of disease and development. Maya was young, uneducated, widowed, and had no in­de­pen­dent source of income. Although ­these conditions ­were not her “fault” (in the sense that they somehow resulted from her personal choices), they constrained her life chances significantly. They also put her directly in harm’s way regarding her prediabetes; it takes l­ittle stretch of the imagination to envision how her illness would pro­gress ­unless something changed in her life,

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and it was certainly already impacting how she felt from day to day. This manner of exploring the structural and personal determinants of w ­ omen’s well-­being is a second theme of the book and the focus of chapter 3. A third theme of the book is how w ­ omen narratively associate hardships in life—­“tension,” as Maya called it—­with chronic diseases. Maya described her difficult relationship with her in-­laws as full of “tension.” As Maya did, w ­ omen frequently used the En­glish word tension to talk about all kinds of life stresses, not just t­ hose associated with illness (Weaver 2017). ­Women often told me that they first got diabetes during a period of tension in their lives, such as the death or illness of a loved one. Anthropologists working in Mexico, the United States, and India have similarly found that p­ eople often perceive their diabetes as starting during a time of ­great distress (Hunt, Valenzuela, and Pugh 1998; Mendenhall et al. 2010; Mendenhall et al. 2012; Schoenberg et al. 2005; Solomon 2016). But the use of the expression tension as a way to describe that stress is uniquely South Asian. Many w ­ omen told me that diabetes also caused tension by placing extra demands on their already busy lives, which ­were filled by childcare, ­house­hold cleaning, cooking, care of el­derly parents-­in-­law, and sometimes a ­career as well. Tension, therefore, was both cause and effect, connected within a biosocial feedback loop of diabetes and stress (for more on the cyclical relationship between diabetes and stress, see Mendenhall 2012). Even in the early stages of research, it was clear that “tension” was ­going to be an impor­tant focus of my work, and chapter 4 explains the detailed study I undertook to better understand this expression. I wanted to know how ­women would define the term, and in early phases of the research I used both structured and unstructured interview techniques to develop a contextual definition of it. I then developed a way of mea­sur­ing the amount of tension in ­women’s lives (Weaver 2017; Weaver and Kaiser 2014). Being able to do this was impor­tant ­because when ­women spoke abstractly about tension and diabetes, it was sometimes difficult to get a comparative sense of the extent to which they experienced ­these impacts. I also mea­sured depression and anxiety symptoms using a standard instrument called the Hopkins Symptoms Checklist-25, which I translated and validated for use in Hindi so I could compare ­whether ­women with diabetes who perceived more tension in their lives also reported more symptoms of depression or anxiety (Weaver and Hadley 2011). This allowed me to assess distress using categories relevant for North Indian ­women while still maintaining some degree of standardization that would allow for comparison of t­hese ­women’s ­mental health with that of ­people elsewhere. ­There was no shortage of tension in Maya’s life, and like her, many ­women with diabetes reported tension about f­ amily, ­children, or financial issues. ­Women and physicians alike often told me that the ubiquitous tensions of big-­city life ­were the key cause of chronic diseases like type 2 diabetes, hypertension, and the malaise that gripped many of New Delhi’s residents at vari­ous points in their lives.



Opening a Win­dow on Diabetes Experience 21

“Tension” served as a way of articulating the ­causes of a complicated disease whose origins are other­w ise quite obscure (“My doctor told me that nobody knows exactly what c­ auses diabetes,” more than one ­woman told me), and whose effective management may be even more elusive. But “tension” was more than that; for many it served as an organ­izing princi­ple of their lives, as the number one topic of discussion with friends, and as a con­ve­nient catch-­all term for complicated constellations of worries, failed social expectations, and threats to well-­being. I address this and more in chapter 4. A fourth key theme illustrated in Maya’s experience is how f­ amily duty and honor can work to w ­ omen’s advantage, and si­mul­ta­neously to their detriment, in North India. Not every­one lives in a multigenerational f­amily like Maya, and even ­those who do often have more autonomy than she did. Nevertheless, ­every ­woman with whom I worked strug­gled in some way to manage the imperatives of self-­care that diabetes introduced into their lives along with the social expectations that they care for ­others. In chapter 5, I describe how ­women with diabetes grappled with notions of care and self-­sacrifice in their families, and in chapter 6 I focus on w ­ omen who are living well with diabetes. Th ­ ese chapters address what are the key priorities in w ­ omen’s lives, and call into question what “living well” actually means in the context of diabetes and urban North Indian domestic worlds. As I illustrate through the course of this book, ­women ­were not uncritical of their role conflicts and often managed to develop creative ways of leveraging their autonomy to accomplish the ­things most impor­tant to them, ­whether or not they involved l­ abor devoted to diabetes self-­management. At first glance, many ­women in this book seem to be defying the logic of self-­care that their physicians and ­family members expect of them ­because they engage in supposedly self-­sabotaging activities like eating foods they have been told to avoid. Yet, a closer look at each ­woman’s experience reveals how they strategically position themselves as subjects worthy of care—­though perhaps not the forms of care their physicians and ­family members recognize as valid. This might be said, to some extent, of Maya, whose moral management of her f­ amily through activities like fasting could be read as an exercise of agency and an exercise of sacrifice ( Jamison 1996; Jeffrey 1998). This ­matters ­because it becomes all too easy to pass judgment on the sensibility of another person’s actions when they are taken out of context. For instance, it would be easy to vilify Maya’s mother-­in-­law if one did not understand that the mother-­in-­law herself had prob­ably suffered at the hands of an overbearing mother-­in-­law several de­cades prior, and that Maya’s in-­laws ­were in the complicated position of needing her (to keep the ­house­hold ­running and to provide later-­ life care) while also having to manage the economic liability that she and her ­children created for them. Attention to the structures shaping Maya’s and ­others’ lives reveals how global pro­cesses, such as economic development and the changes in values and norms that come along with it, trickle down into the interstices of ordinary ­people’s lives. What might Maya’s life situation look like if she had had

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more opportunity to be educated? Or if she and her husband had deci­ded to establish a nuclear f­amily ­house­hold separate from his parents, as young c­ ouples are increasingly choosing to do in urban India? Although it is about diabetes, this book is not just about diabetes. As a point of entry into a ­whole social world, ­women’s experiences with diabetes can tell us about ­family life, individual and group values, cultural norms, expectations, conflicts facing urban Indian w ­ omen in the twenty-­first ­century, and much more. They give us win­dows into the lives of o­ thers—­one of the fundamental goals of anthropology as a discipline. In this way, the question “What does it mean to be a ­woman with a chronic disease in urban India?” resonates far beyond its immediate implications for health, teaching us about gender, ­family, global development, and what ­matters from day to day in the lives of a large portion of the world.

2 • SEEKING MODERN INDIA

“Aap thodi do minutein bahar baith jao [Please go sit outside for a c­ ouple of minutes],” said Dr. Kumar, the general physician who staffed the volunteer clinic for two hours each morning. ­After this rather abrupt dismissal of the ­woman I had been interviewing, he asked me in En­glish, “You mind if I sit down ­here? See, I’ll just tell you a few ­things about the Indian culture.” Without waiting for a response, he sat down. Having had many exchanges along t­ hese lines with older men who felt completely unabashed about imparting their knowledge, I settled in for what I expected would be a long, mostly one-­way conversation. As it turned out, his comments encapsulated many popu­lar views about forms of living in urban India, changing gender roles, and health, which is why I reproduce them at length ­here. ­After exchanging a few pleasantries about how long I had been in India and where I was staying, Dr. Kumar launched in. “I could tell you a few t­ hings about Indian culture,” he repeated, picking right back up where he had left off a moment earlier. “I’ll go into a ­little more of details, and please understand that I’m not trying to criticize anybody. See, up to 1947 it was British. The British ­were basically concerned with ruling the ­people, and making money for themselves. They ­were not interested in other t­ hings like education, social awareness, t­ hose ­things, they ­were not aware of. As a result in India, first of all, the source of income for most of the ­people was agricultural. And they ­were uneducated. Most of them ­were uneducated. So that’s one [­thing], right?” He paused briefly, looking at me. To signal that I was following, I almost imperceptibly waggled my head side-­to-­side in the distinctly Indian “yes” head nod. “Right,” he continued. “So, the second ­thing is, ­there was a system of a joint ­family, up to maybe twenty years back, fifteen years back. Ever since ­people have started ­doing MBAs and the girls and the ladies are starting working, the typical culture is changing. Th ­ ere is a change.” He glanced at me again. I waggled. But, he explained, this culture change was limited to the elite. “Right. Exactly. Th ­ ere is a change, t­here is a change. But that kind of a change you’ll only find in educated p­ eople, and in slightly higher strata of society, not in the poor b­ ecause they ­can’t afford it. Education is very costly. Like if you go to a 23

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government school, right now I think—­I’m not very sure about this—up to class ten, possibly no exams.” My research assistant interjected, “No, sir, they happen in sixth and seventh.” “Sirf naam ke liye [only in name],” he replied, meaning the exams are not taken seriously. Turning back to me, he continued, “Well, you can imagine the standard of education. If you go to private schools the education level is rather good, but it’s costly, very costly, so average ­people ­can’t afford that.” He then returned to the point he was trying to make earlier about dif­fer­ent kinds of w ­ omen. “So, I suggest your study is very good, but one more impor­tant ­thing, I think: t­ here has been a tradition in India that the ladies eat last at the meals. All of them ­don’t sit at the ­table and eat at the same time. No. The ladies eat last. The pos­si­ble explanation for this could be, like, what­ever you cook, suppose you fall short—­then the lady adjusts.” “She has to take the short,” I interjected, thinking I was confirming what he had just said. “No,” he replied, “she adjusts. Like the vegetable you have cooked, if somebody comes [unexpectedly for dinner] and the vegetable is finished, then the lady would eat roti [flatbread] with achar [pickles] or what­ever [in place of vegetables]. She ­won’t cook for herself. So the kind of sacrifice for the f­ amily is done by the ladies. More or less, more or less that has been the culture. But with modern t­ hings now—­the girls getting educated and getting employment, earning money for themselves, and of course their husbands also—­now it’s changing. It’s more like a Western kind of a t­ hing. More like a Western kind of a t­ hing, where every­body works and every­body earns.” “Do you think this could be the cause of diabetes in India, this Western lifestyle?” I asked, voicing the sentiment I had heard echoed many times among doctors and laypeople alike: that Westernization and chronic diseases are closely related. “No,” he retorted, to my surprise. “First of all, I ­don’t believe ­there is diabetes in India in the younger age group—in the younger age group belonging to the kind of strata p­ eople who come h­ ere [to this charitable clinic]. If you go to the corporates [­people who work in white-­collar jobs], especially the corporates where p­ eople are working twelve hours or what­ever, the level of diabetes or blood sugar may be higher ­because they ­don’t cook. ­They’re working twelve hours, fourteen hours. ­There’s no time to cook. So ­you’re eating ­either outside, or bring a meal from outside, or ­you’re eating the junk food, like anybody ­else.” I nodded again, thinking he was in fact confirming the association between what he referred to as “Western” lifestyles and diabetes, even though he had just denied it. “Exactly. So, what I meant was, that what we have h­ ere [in this clinic] is one group of ­people. You’ll get a fair idea, but you may not find a very positive result in them. Besides that you must spend some time in corporate India also. And go to a place like maybe Gurgaon.” Gurgaon is one of the other cities in the National



Seeking Modern India 25

Capital Region, a hub for the technology industry and home to many newly wealthy individuals. I told him I was also working in private clinics catering to wealthy families. “That’s fine,” he said, seemingly appeased. “So you go t­ here, talk to ­those ­people,” he said. “And one more ­thing. Regarding their attitudes also, you’ll find that ­those girls are much more open to discuss any issue, including their sexual life. Whereas if you want to discuss something, including even periods for example, ­these girls or ladies [at this clinic] may be hesitant. That’s a kind of a psychological barrier. So that’s what I meant. What we have is one group of p­ eople who are kind of, well, I ­won’t call it socially oppressed, no, but you could call it Indian culture.” “More disadvantaged, you could say?” I ventured, thinking that he was trying to draw a distinction between socioeconomic classes. “No,” he said again. “No, let’s divide the group into two p­ eople. One is the typical Indian culture, what you get ­here. And then the Western culture, which you get in the corporates. So, ya, discuss both of them. And I am ­here, in case you need any help or anything, then I’m ­here.” Without missing a beat, he stood up, slapping his hands on his knees as he did so. “Ok. Challo. [Let’s go.] So, you might be knowing ­these ­things, but it’s always better to get another person’s view.” He walked out. Then, to the ­woman who had been waiting outside: “A jao. [Please come in].” ­ ere is clear irony in beginning a chapter about ­women, gender, and modernity Th with a high-­class, high-­caste man’s rather authoritarian oration about ­women’s “traditional” status. It felt appropriate to do so, however, ­because ­people like Dr. Kumar often dominate public conversations about the changes g­ oing on in India t­ oday, and, perhaps even more importantly for my purposes, ­because ­women with diabetes often encounter ­people like him when they visit the doctor. Dr. Kumar’s words struck me at the time—­and still strike me now—as an incredibly rich articulation of common ideas in North India about the relationships between colonialism, modernity, and w ­ omen’s changing social positions. Many of the themes he touched on, including the decline of the joint ­family, increasing ­women’s education, ­women’s social imperative to make sacrifices for ­others, and broader social anx­ie­ ties about “traditional Indian” values being replaced by “modern Western” values, are key themes of both this chapter and the book. Most of the changing cultural norms that Dr. Kumar described have taken place since 1991, when the then prime minister, Narasimha Rao, introduced sweeping new policies to liberalize the Indian economy. He and his finance minister, Manmohan Singh (who himself subsequently served as prime minister from 2004 to 2014), reduced import tariffs and taxes, deregulated markets, and encouraged greater foreign investment. ­These policy changes resulted in an economy whose GDP has grown by anywhere from 5 to 9 ­percent per year ever since, with only a brief dip during the 2008 economic crisis (World Bank 2015). Contrast that to the

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United States’s annual growth since the year 2000, which has been lucky to see 3 ­percent, and one can begin to get a sense of the remarkable economic expansion that has happened in India in the last three de­cades. India is now one of the world’s fastest-­growing economies (International Monetary Fund 2016). New Delhi is India’s capital and its second-­largest city. The city has expanded so much that its borders now run into t­ hose of Noida, Gurgaon (as noted above, the location of many of the international IT corporations and home to many of the newly wealthy elite that Dr. Kumar referred to as the “corporates”), and other cities that ­were once separate administrative areas but now increasingly function as suburbs of Delhi. The entire conurbation is referred to as the National Capital Territory (NCT). It is home to a total population of over twenty-­five million, making it one of the two or three largest metro populations in the world (United Nations 2016). Although referred to officially as “New Delhi,” the city consists of two distinct parts: New Delhi and Old Delhi. Old Delhi, occupying the north-­central part of the city, was originally constructed along the banks of the Yamuna River by Shah Jahan, the seventeenth-­century Mughal ruler also responsible for the construction of the Taj Mahal. Built up and destroyed many times since then, Old Delhi has a gritty feel. It is full of narrow alleys and winding streets and is home to most of the city’s historic buildings, many of which date back to Jahan’s reign. It is also the area of the city with the highest concentration of Muslims, who have settled around one of India’s largest mosques, the Jama Masjid. The mosque is surrounded by a bustling open market selling fresh meat,1 gold and silver, sweets, furniture upholstery, saris, and books. New Delhi, by contrast, occupies the southern part of the city and was planned by the En­glish architect Sir Edwin Lutyens during the British colonial period in the early twentieth c­ entury. It was designed as the new seat of the colonial government, and it still ­houses most of Delhi’s wealthier neighborhoods and ­government buildings. New Delhi is Old Delhi’s more polished s­ ister, with gated communities arranged around small vest-­pocket parks. More than half of the ­women with whom I worked lived in New Delhi, but a sizeable number also lived in Old Delhi. Colloquially, u­ nless they specifically want to differentiate between the old and new portions of the city, ­people usually refer to the city simply as “Delhi,” a convention I follow throughout the book. The Delhi of ­today looks very dif­fer­ent from the Delhi of the 1980s, and remarkable paradoxes have unfolded during the city’s rapid growth. For de­cades, ­people writing about Delhi, both Indians and foreigners, have been astonished by the city’s seemingly endless ability to engulf both physical territory and existential paradoxes (Dalrymple 1994; Dasgupta 2014). Multilane highways ring the city, yet ­until recently itinerant cows blocked their traffic. Delhi boasts one of the newest, most extensive metro systems in the world, which now reaches to the other cities in the NCT, yet it lacks basic infrastructure such as efficient municipal trash



Seeking Modern India 27

collection. ­People die on its busy streets from tuberculosis and hunger, yet the region is home to some of the wealthiest p­ eople on earth. Characterizations of the city as full of paradoxes do, in some ways, ring true. Nearly all of the ­women in my study had been alive long enough to witness the city’s transformation.

“Traditional” and “Modern” Delhi One ­thing uniting the multitude of religious, ethnic, and linguistic groups who call Delhi home is a concern about rapid economic and social change, very much along the lines of Dr. Kumar’s description of the tradeoffs associated with economic modernization. This concern was not always negative; often it was a fascination with, and a lively public debate over, the new forms of life emerging in urban India. Many p­ eople—­especially younger ­women who ­were my peers during the time when I was conducting this research—­were taking advantage of new opportunities available to them in the city, such as getting a college or postgraduate education, marrying l­ ater, establishing ­house­holds in­de­pen­dent of their parents-­ in-­law, and choosing when or even ­whether to have ­children. At other times, however, this conversation revolved around concerns about the disintegration of traditional values and the corruption of youth, and t­ hese worries ­were typically voiced by older generations, by popu­lar media, and by government officials. The standard story, very much reflected in Dr. Kumar’s discourse, is that India is (or at least once was) a highly traditional, hierarchical, and religious society. Like many other countries around the world, India is rapidly modernizing, losing traditional cultural practices and social structures as young p­ eople assimilate to the lifestyles, aesthetics, and values imported with Western media. (Recall Dr. Kumar’s comment, “It’s more of a Western t­ hing,” referring to the model of a nuclear ­family in which both parents are highly educated and work outside the home.) This traditional-­modern dichotomy has come ­under strong criticism by a collection of scholars known as the Subaltern Studies Group for its tendency to portray Indians as backward and anti-­Western (e.g., Chatterjee 1989, 1990, 1997; Guha 1997a, 1997b; Sarkar 1998; Spivak 1988). The crux of the critique is that scholarly discussion of India as a nation has been almost entirely dominated by Westerners’ accounts dating back to the colonial period, thus precluding the possibility of an alternative narrative in which the West is not positioned as the standard to which other socie­ties should assimilate. The traditional-­modern dichotomy fails to account for the fact that this meeting of value systems is messy, partial, and inconsistent, resulting as much in the “Indianization” of Western values as it does in the “Westernization” of Indian values (Dasgupta 2014; Guha 1997a; Radhakrishnan 2011). Dr. Kumar was right to begin his narrative with a critique of the British colonial government’s neglect of social ser­vices ­because (at the risk of oversimplifying

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the ­matter) colonial capitalism and its aftereffects did indeed generate the impoverished conditions and incomplete infrastructure that India has been struggling with since it attained in­de­pen­dence in 1947 (Chaudhary et al. 2016; Dirks 2008; Kale 2014; Sanyal 2007). Dr. Kumar’s account, however, left l­ ittle room for the adaptations that p­ eople make to the “Western kind of a ­thing” he recognized in his white-­collar patients. Barely anyone with whom I worked fit neatly into the two-­part scheme that he laid out: ­those subscribing to “Indian culture,” whom he characterized as oppressed and uneducated, versus t­ hose subscribing to “Western culture,” whom he characterized as educated, engaged in formal employment, but too busy to take care of themselves or o­ thers. Many of the w ­ omen in my study grew up poorer, less urbanized, and less globally connected as c­ hildren than they ­were as adults, and therefore they had witnessed a large amount of change in their lifetimes. Like so many ­people in India ­today, ­these ­women ­were participating in some aspects of middle-­class life, but not ­others. As sociologist Jaita Talukdar beautifully describes it, “Being part of a modern world requires a constant engagement with (re)classifying practices, beliefs, and values as traditional or modern” (2012, 111). ­Women in my study ­were actively engaged in this pro­cess; they existed somewhere between the quintessentially “traditional” and “modern” groups, and they talked about it quite a lot. False though the traditional-­modern dichotomy might be, w ­ omen often used it to explain their life circumstances and their worries. ­People in my study often linked the supposed tension between traditional and modern lifestyles directly to health and well-­being; this theme resurfaces in this book as I narrow in on ­women’s physical and ­mental health. For instance, one young female psychologist with whom I struck up a friendly relationship felt that the tension between “Westernization” and “Indianization” was at the heart of many of the ­mental and physical health prob­lems she saw among her older female clients, including t­ hose with diabetes and depression. She opined that m ­ ental ill health is on the rise all over India ­because ­people are stressed by the conflict between Indian and other value systems that pervade their lives. Another man, the husband of an interviewee, described to me an idyllic picture of village life in which “­women are oppressed, but they are happy” ­because they know what they are supposed to do and to whom they owe their allegiance. He believed that depression was an urban phenomenon related to the stress of unclear and shifting gender roles. In all t­ hese cases, ­there was a shared undercurrent of concern about where ­women’s attention was being directed and where it ­ought to be.

Domestic Modernity, Class, and Caste in Postcolonial India Some historical and po­liti­cal context is crucial background for understanding the priorities ­women are negotiating in con­temporary Delhi. Like Dr. Kumar, I begin this very brief overview with British colonization ­because many of the po­liti­cal,



Seeking Modern India 29

ideological, and economic conflicts around gender in India ­today can be traced back to its emergence as a nation from British rule. The British first arrived in India in 1612 seeking spices, and they ruled the region in one or another incarnation of government for nearly two hundred years, from 1757 to 1947. India’s nonviolent campaign for in­de­pen­dence, led by Mahatma Gandhi, helped put w ­ omen at the center of an emerging national identity. In his speech and writings, Gandhi (2013 [1927]) exhorted his followers, as the willing subjects of a new nation, to emulate the qualities of “saintliness” that he observed in his own ­mother: her self-­sacrifice, piety, devotion, and pursuit of the greater good. ­Here an image of ­women as generous self-­sacrificers became tethered to India’s emergence as a sovereign nation ­after British rule. As the British colonial government retreated in 1947, it hastily split the territory into Hindu-­majority India and Muslim-­majority Pakistan in an event known as Partition. Overnight, Hindus in the now-­Muslim Pakistan and Muslims in the now-­Hindu India found themselves on the wrong side of their respective borders. ­There had always been some under­lying Hindu-­Muslim tensions in the border region, but Partition brought them to an explosive head. It resulted in massive displacement and over a million deaths at the hands of armed militias, many of them extremely violent in nature, as ­people attempted to cross the border in both directions. Gruesome vio­lence against ­women during this time situated ­women’s bodies as symbols of national purity that had been ­violated on both sides of the India-­Pakistan border, and served for the public as an embodied reminder of the precarity of national identity (Das 2007). Th ­ ere are still plenty of ­people alive t­ oday who remember the atrocities of Partition, and the association between ­women’s bodily purity and national purity has never entirely dissipated. In the pres­ent, the women-­domesticity-­nationalism rhe­toric is perpetuated by the po­liti­cally ascendant Rashtriya Swayamsevak Sangh (RSS; “National Volunteer Union”), the militant right-­wing Hindu po­liti­cal party whose leader, Bhagwat, made the remark about the “two Indias” a­ fter the rape of Nirbhaya. The mission of the RSS is, in its own words, “to carry the nation to the pinnacle of glory, through organising the entire society and ensuring protection of Hindu Dharma” (Rashtriya Swayamsevak Sangh 2015)—in other words, to preserve a conservative Hindu way of life against the perceived onslaught of Western corruption (Sarkar 1998). The RSS wields considerable po­liti­cal influence in North India ­today by serving as the training ground for many politicians of the Bharatiya Janata Party (BJP; “Indian ­People’s Party”), the right-­wing Hindu party that won both the prime ministership and Parliament majority in 2014 by a landslide. ­Women, as part of the RSS’s mission in con­temporary North India, have once again been morally elevated as the citizens most crucial to the reproduction of both the Hindu population and its scriptural values. This harkens back to an earlier time in India’s nation-­building when Gandhi called on ­women to serve as the

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domestic heart of the new republic, but it retools domestic modernity as a technology of right-­wing Hindu pop­u­lism. In addition to spending time with c­ hildren, North Indian middle-­class ­women are seen in this cultural script as responsible for reproducing the ­family’s social status through bearing and raising ­children (especially sons) according to values that emphasize piety, study, and ­family devotion. Th ­ ese efforts are enhanced when a ­woman is herself educated. Some scholars argue that being educated, rather than indexing a w ­ oman’s wage-­earning capacity or likelihood to participate in the ­labor force, is desirable for India’s urban ­middle classes precisely b­ ecause it makes w ­ omen more able to support their ­children’s education and their husbands’ livelihoods, not ­because it makes ­women themselves more employable (Donner 2008; Seymour 1999). Neesha, a w ­ oman in her late forties who lived in a large joint f­ amily with her husband and ­children, her husband’s ­brother’s wife and ­children, and her parents-­ in-­law, had a situation like this. She explained, “I have a master’s in education, but my husband never liked the idea that I might work. He says, ‘Both taking care of the h­ ouse and g­ oing to the office, I ­don’t like.’ ” Neesha did not have diabetes, but when her son was diagnosed with type 1 diabetes, she recommitted herself to staying at home to help him manage his health and his studies. But as her son grew and his illness came u­ nder control, she once again began considering the possibility of working outside the home. “We could have a maid, but [my husband] ­doesn’t want that. He says he earns enough that he can provide for me well. At his office ­there are a few females working, and he sees how much they strug­gle. He says, ‘I d­ on’t want that.’ ” Instead, Neesha oversaw h­ ouse­work and managed her ­children’s schooling and extracurricular activities. “I’m r­ eally concerned about my ­children’s education,” she explained. “When they have exams, they need me. They want my attention.” Given her high level of education, Neesha was able to tutor them instead of sending them to an expensive private tutor. She also sometimes assisted at her husband’s job as a chartered accountant. “­After ­doing ­house­work I go with my husband to the office and help him a l­ ittle bit, ­because I am also from a commerce background.” In this ­family, education and employment ­were group proj­ects, and Neesha participated in them all even though she herself was not formally employed. Like Neesha, many w ­ omen in con­temporary North India are part of a strong trend ­toward staying home rather than working in a salaried job, even if they are highly educated. This is in part ­because ­there is significant value associated with having at least one ­woman home full-­time. Staying at home is a source of pride for many ­women and an index of ­family honor ­because it indicates that the ­family has sufficient financial stability for w ­ omen not to work, and signals the f­ amily’s ability to produce c­ hildren who w ­ ill come from “­whole” homes where they receive appropriate religious and cultural education (Dickey 2002; Radhakrishnan 2011). Po­liti­cal scientist Amrita Basu’s work among conservative ­women Hindu activists in the 1990s documents the remarks of the ­woman president of the all-­India



Seeking Modern India 31

BJP ­women’s organ­ization: “­Women should stop demanding their rights all the time and think instead in terms of their responsibilities to the f­ amily” (Basu 1998, 179). Her secretary echoed, “We want to encourage our members not to think in terms of individual rights but in terms of responsibility to the nation” (Basu 1998, 179). Contrary to the BJP’s stance on t­ hese issues, however, some scholars argue that it is nearly impossible in India ­today not to be engaged with the new forms of modern living associated with the country’s economic liberalization. Rapid economic development has allowed the m ­ iddle class’s aspirations to soar, and b­ ecause this demographic group is symbolically so impor­tant, the rest of the nation’s aspirations have soared along with them (Chua 2014; Fernandes 2006; Radhakrishnan 2011). “While only a narrow segment of the population actually enjoys the benefits of economic liberalization,” observe feminist historians Bhatt, Murty, and Ramamurthy, “it is in the promise of new-­middle-­class status for non-­dominant fractions of the ­middle classes . . . ​that ‘hegemonic aspirations’ get articulated” (2010, 129). The figure of the emerging Indian ­middle class functions as a po­liti­ cal tool that informs how ­people all over India imagine the “good life”; markers of middle-­classness, including at least one ­woman staying at home, consequently hold considerable power for all class groups in urban India t­ oday. Figuring out who actually belongs to India’s ­middle class is a challenge. If we define ­middle class by internationally standardized expendable income, the m ­ iddle class in India is actually quite small, comprising perhaps 15 ­percent of the total population (Credit Suisse 2015). According to other estimates, it comprises anywhere from 5 to 25 ­percent (Sridharan 2004). Despite this small share in ­actual population percentages, the ­middle class holds an outsized place in the national imagination as the way forward for India, and it has done so for generations (Bhatt, Murty, and Ramamurthy 2010; Chua 2014; Dasgupta 2014; Fernandes 2006; Hiro 2015; Radhakrishnan 2011). For this reason, many scholars define the Indian ­middle classes ideationally as ­those with “a shared ‘life-­world,’ within which education, full-­time white-­collar employment for men, new consumption patterns and sensibilities have developed as denominators of identity from the colonial period onwards, but which is marked by anx­i­eties around social mobility, as its assets have to be reproduced anew within ­every generation” (Donner 2008, 59). This was how I defined the middle-­class groups in my study, and in the next chapter I describe how my research assistant and I categorized individuals into approximate class groups based on a combination of employment, dress, housing, education, and possession of assets. Whenever I write about class in India, p­ eople immediately ask me about caste ­because this is the system of social stratification most p­ eople in the West associate with the country. I want to spend a few minutes describing caste ­because it, like class, has impor­tant bearing on ­people’s social mobility and life chances in India. Caste is an inherited Hindu social classification that shapes a person’s

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occupation, marriage prospects, and social mobility. Briefly, the Hindu caste system consists of four main varnas, which are outlined in the ancient Vedic texts and ranked hierarchically according to their ritual purity. Historically, Brahmins, or priests, had the most social status; Kshatriyas, or warriors, w ­ ere the most power­ful; Vaishyas, or merchants, w ­ ere the wealthiest; and Shudras, or laborers, ­were the ser­vice providers. Within ­these large groups are innumerable subcaste divisions called jatis, which are often glossed in En­glish as “birth groups,” and which can tell you about someone’s region of origin and their larger caste standing. ­Those considered so ritually impure that they are outside the caste system are referred to as Dalit (literally, “oppressed”), or untouchables. ­There are parallel caste-­ like systems among non-­Hindu groups in India, but the taxonomy described ­here applies mainly to the Hindu majority. The relationship between caste and class is remarkably complex, and it deserves a prominent place in any discussion of modernity in India ­because it has been a target of colonial and postcolonial governance. Some scholars claim that class is now supplanting caste as the most impor­tant source of group identity in cities, where anonymity makes class the more easily legible of the two systems (Dickey 2002; Liechty 2003). However, technologies of government during British rule and in present-­day India have also reinscribed caste as a crucial source of personal identity, even as they have criminalized caste-­based discrimination. The British intentionally educated a small group of high-­caste Indians to serve as bureaucrats in their government’s perpetually understaffed low ranks, and this is the origin of the modern-­day ­middle class’s emphasis on En­glish language and government jobs (Dasgupta 2014; Fernandes 2006; Radhakrishnan 2011). Caste-­based discrimination was outlawed in Article 15 of the country’s 1949 constitution, and in con­ temporary India, affirmative-­ action legislation reserves up to 49.5  ­percent of positions in government-­funded educational institutions and jobs for ­people of lower castes. This has, rather paradoxically, spurred many groups to lobby for inclusion in the “lower-­castes” designation so that they can access ­these benefits (de Zwart 2000). Although caste and class are not the same t­ hing, ­there are some clear relationships between the two systems. In India t­ oday, the ­middle and upper socioeconomic classes are still dominated by high-­caste families, who place a heavy cultural emphasis on education and thus have greater socioeconomic mobility than families from lower-­caste groups (Radhakrishnan 2011). Most of India’s capital wealth, like land and infrastructure, is still owned by higher castes, whereas lower castes make up the vast majority of wage laborers. Each caste and class group was well represented among the w ­ omen in my study, but the vast majority of Shudra (laborer caste) ­women (82  ­percent) belonged to lower or lower-­middle socioeconomic groups, whereas the majority of Vaishya (business-­ caste) ­women (73 ­percent) belonged to the upper-­middle or high socioeconomic groups. Brahmin (priest caste) and Kshatriya (warrior caste) w ­ omen ­were more



Seeking Modern India 33

evenly spread across the socioeconomic groups, but t­ here was a clear alignment between the lowest caste Shudra ­women and poverty, and between business-­ caste Vaishya ­women and wealth. The ­women with whom I worked w ­ ere mostly ­middle class according to my and my research assistant’s estimations, but about 20 ­percent of them fell into the lowest socioeconomic grouping, and another 20 ­percent fell into the highest.2 They ­were relatively evenly distributed across the four main caste groups, with 16 ­percent self-­identifying as Brahmin, 15 ­percent Kshatriya, 18 ­percent Vaishya, and 14 ­percent Shudra. The other 37 ­percent ­either identified with a group that fell outside this four-­part schema—­such as Punjabi Hindu (a regional and religious identity rather than caste per se, though the three main sects of Punjabi Hindus are sometimes referred to as castes), or Sikh or Muslim (religious rather than caste identities, though ­these too involve caste-­like hierarchies)—or declined to respond (only a few individuals). Among ­women in my study who w ­ ere part of the m ­ iddle or lower m ­ iddle classes and castes, aspirations for social mobility through education ­were almost palpable. During interviews, w ­ omen often asked us about how their c­ hildren might get training to do the kind of research work that my research assistant and I ­were ­doing. Meanwhile, however, per­sis­tent economic in­equality (complicated by caste) and fierce competition for education and jobs (also complicated by caste, due to the affirmative-­action policies I described a moment ago) have kept the ­actual attainment of such aspirations at arm’s length for many members of the ­middle classes and lower castes (Chua 2014; Hiro 2015). Recalling her middle-­class, lower-­caste neighbors from childhood, a young Punjabi ­mother with a master’s degree in education remarked, “We had some Jat [a lower caste] neighbors. All the boys in their f­amily had just one dream: that they would shift abroad. They have to shift out. The ­daughters had just one dream, that they would meet and marry an NRI [nonresident Indian, an Indian living abroad]. That’s quite a good dream, eh?” She laughed and shook her head at the recollection, and more precisely at the impossibility of this dream for a ­family of their caste and class status. Although the Jat neighbors’ hopes to live abroad might have been imminently unattainable, such social mobility is the dream ­toward which many in con­ temporary India are striving (Bhatt, Murty, and Ramamurthy 2010). Sita, a domestic worker I ­w ill introduce in chapter 3, barely scraped together the 600 rupees per month that she paid for her high school c­ hildren’s extracurricular tuitions, in hopes that it would help them eventually qualify for some of t­ hose highly competitive seats in college reserved for applicants from disadvantaged circumstances. Sita prioritized this expense over her diabetes care, and even sometimes over the ­family’s food purchases, ­because she perceived it as a crucial investment in her ­children’s ­future. As this suggests, middle-­class aspiration is not only a concern for t­ hose already part of the m ­ iddle or lower ­middle classes;

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it trickles down even to ­those in the lowest caste and socioeconomic groups, who are often characterized in the lit­er­a­ture as the “subaltern” classes b­ ecause they are socially, po­liti­cally, and geo­graph­i­cally outside the power structures that dominate society (Bhatt, Murty, and Ramamurthy 2010; Guha 1997a).

Changing ­Family Structures, Marriage Patterns, and Gendered Care Roles As in many parts of the world, ­women in India remain primarily responsible for social, cultural, and biological reproduction, for preserving what historian Partha Chatterjee refers to as the “inner core of the national culture, its spiritual essence” (1990, 239). However, ideas in India about how families should be structured have changed since the early 1990s. The norm used to be what is referred to as a “patrilocal” joint ­family arrangement, wherein a new bride moves in with her husband and his parents and raises their c­ hildren in the paternal home, like Maya in chapter  1. But census data from both 2001 and 2011 indicated that 70  ­percent of ­house­holds in Delhi included only a single married ­couple, suggesting a nuclear rather than a joint ­family arrangement. (Families in which a widowed parent lives with their married son, or a widowed adult lives with their parents or in-­laws, as Maya did, would not be detected ­here.) About half of the ­women with whom I worked lived in nuclear families; the other half lived in patrilocal joint families. Dr. Kumar was referring to this significant change in f­amily structures when he said that ­until fifteen or twenty years ago, ­there ­were primarily joint families in India. Both of ­these arrangements—­joint and nuclear families—­have profound implications for ­women’s lifestyles and responsibilities (Wadley 2002), and thus for their ability to care for themselves if they develop a lifelong disease like diabetes. As Maya did, typically when a newly married ­woman moves into a joint ­family, she takes over management of the ­house­hold from her mother-­in-­law. ­Women in this situation are expected to “adjust”—­a word both Dr. Kumar, from this chapter, and Maya, from chapter 1, used to describe the ways in which a ­woman should be flexible and self-­effacing. This virtue is sometimes described in North India allegorically: “like ­water flows into a ­bottle and occupies its place,” so too should ­women change shape to fit within the structure of the joint f­ amily (Derne 1995, 22). If t­ here is more than one married son in the h­ ouse­hold, the daughters-­ in-­law work together to share domestic responsibilities, or one may work outside the home while the other maintains the domestic sphere. Adult ­women in joint families are usually responsible for taking care of their own ­children, their husbands, and their parents-­in-­law. At pres­ent, India’s population has a growing proportion of el­derly individuals and a shrinking proportion of young adults to support them ­because birth rates are declining (Central Intelligence Agency 2011). As populations age and ­family sizes decrease, ­women of the



Seeking Modern India 35

so-­called “sandwich generation”—­those “sandwiched” between young ­children and older adults who both depend on their care—­may face even heavier burdens than they once did ­because they are si­mul­ta­neously responsible for the care of their ­children and of their increasingly frail parents-­in-­law, who are living longer but not necessarily living healthier. This can weigh heavi­ly on a w ­ oman, especially if she has a chronic disease. Some w ­ omen even linked the onset of their diabetes to the stresses of managing joint f­ amily living. ­Toward the end of my research in Delhi I met Ranjani, a wealthy, English-­speaking Punjabi ­woman who worked for a multinational life insurance com­pany. Despite her work outside the home, Ranjani lived in a rather “traditional” f­amily arrangement: she shared a two-­story ­house with her parents-­in-­ law, her son, and her husband, who spent much of the year traveling in his work with the Merchant Navy. When I asked her why she had gotten diabetes, she replied, “I think a very sedentary life, and also a lot of tensions on the home front. I think it’s more of a joint ­family, ­because the in-­laws are with us.” “That can be stressful,” I sympathized, having by this point in my research heard many stories about the difficulties of joint ­family living. “Too much, too much, too much!” Ranjani agreed, shaking her head. “See, my in-­laws are old p­ eople, eighty-­three-­plus, both of them, and they have a d­ aughter who is mentally retarded [sic] also. So taking care of all of them, and looking a­ fter my ­children also. Then, my husband is out most of the time. He’s in the Merchant Navy so he’s out of the h­ ouse [traveling]. So, taking care of the h­ ouse, the daily routine, it’s quite tedious. The bills, the ­running around, the banking, the old ­people [health] scares, taking them to the vari­ous hospitals, somebody has to go for orthopedics, somebody for ophthalmology. I have part-­timers [maids] coming in, and full time also, but they also give a lot of trou­ble. The maid is more trou­ ble than the in-­laws!” Ranjani’s circumstances highlight a connection between the care of o­ thers and one’s own ill health, a theme that w ­ ill return l­ater in the book. Noteworthy for the pres­ent discussion are the many sources of responsibility in Ranjani’s life: her own work for the insurance com­pany, her ­family situation (which nearly constituted a full-­time job in itself), her husband’s frequent travel abroad, and the fact that she had no one with whom to share t­ hese responsibilities except the hired maids who, she claimed, created even more work for her to manage. Despite ­women’s frequent complaints about joint ­family living, ­there ­were also benefits to this arrangement (Wadley 2002). Although nuclear f­ amily living confers relative freedom for young married c­ ouples, ­those in nuclear families often bemoaned the lack of additional ­people in the ­house­hold to help out with emergency childcare, overseeing domestic servants, or other domestic tasks. Living in a nuclear ­family also did not guarantee a release from responsibility to elders, as my friend Pinki discovered during the course of my research. When I first met Pinki, a high-­caste Hindu, she was living and working in Delhi. For years she had

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been dodging her parents’ repeated efforts to arrange her marriage b­ ecause she and her long-­term Muslim boyfriend w ­ ere developing an elaborate plan to reveal their relationship to their parents in hopes of securing their blessings for an interreligious love marriage (this is the term used to differentiate a marriage initiated by the partners from the more traditional arranged marriage). When an illness in the f­ amily made her boyfriend feel that he simply had to capitulate to his parents’ wishes for him to get married, foreclosing the possibility of his love marriage with Pinki, she fi­nally agreed on a fiancé who lived far away—an attractive quality for an in­de­pen­dent, educated ­woman like her b­ ecause it meant that she prob­ably would not have to share a ­house­hold with his conservative parents. Ironically, ­after her marriage and resettlement to her husband’s place of residence, she ceased to work and had to endure regular visits from her mother-­in-­law, who would stay for months at a time to make the long journey worthwhile. She spent most of her time deriding Pinki’s appearance and cooking skills, and accusing her of benefiting disproportionately from the marriage b­ ecause it had given her the chance to move away. Pinki’s experience brings up another aspect of contested gender norms in India: the institution of arranged marriage, wherein the bride’s and groom’s parents use social networks (and, increasingly, social media) to identify potential marriage partners for their c­ hildren. Pinki’s fiancé was a man of the same caste and from the same part of the country as her f­ amily. The alternative arrangement in which young adults find their own marriage partners through dating, referred to as “love marriage,” is highly romanticized in the film industry and is becoming more common. Yet it remains an unlikely and even undesirable possibility for most, even among the educated upper m ­ iddle classes. Ranjani’s (the health insurance saleswoman’s) marriage was arranged, as ­were the marriages of almost every­one in my study—­including Pinki’s, even though she had hoped for a love marriage. Ranjani’s and Pinki’s experiences demonstrate that increased education, participation in the formal economy, and transnational orientations do not negate institutions such as the joint ­family and arranged marriage. Rather than being mutually exclusive, ­these ostensibly “modern” and “traditional” norms exist side by side in many w ­ omen’s lives, just as they do in broader politicized discourses about how ­women should comport themselves in con­temporary India. Like Pinki, many ­women in India are getting gradu­ate or postgraduate education. But, also like Pinki, this does not necessarily translate into their increased involvement in the salaried l­abor force. In 2011, an estimated 18 ­percent of all ­women in India ­were enrolled in tertiary education (as opposed to only 7 ­percent at the 2001 census). They accounted for nearly half of the total enrollment in higher education (Ministry of ­Human Resource Development 2016). Although college-­ educated ­women in India are more likely to be employed than ­those with only primary or secondary education, their participation in the l­ abor force is quite low compared with that of other emerging economies. In 2012, a Gallup poll indicated



Seeking Modern India 37

that only 34 ­percent of Indian ­women with a college degree ­were employed, and only 17 ­percent ­were employed full time in white-­collar jobs, compared with 81 ­percent and 54 ­percent of Chinese ­women (Crabtree and Pugliese 2012). As ­house­hold incomes rise, w ­ omen withdraw from the l­abor force except among the highest-­educated groups, and greater spousal education is associated with lower ­women’s ­labor force participation (Das et al. 2015). This is reminiscent of Neesha’s situation from earlier in the chapter. She was the ­woman who helped her accountant husband at his office and did not work in a job of her own, even though she was as educated as he was, b­ ecause her husband felt it would compromise the ­family’s quality of life. Like her, a full 44 ­percent of the ­women with whom I worked held a bachelor of arts degree or higher, but only 11  ­percent worked outside the home in white-­collar jobs. Another 10 ­percent with ­little to no education worked as domestic laborers in the informal sector. The remaining 79  ­percent worked exclusively inside the home and ­were ­mothers, wives, and grand­mothers; only a striking 2.5 ­percent (seven ­women) had never been married. ­These statistics reflect a larger stagnation in ­women’s ­labor force participation in India, which has remained virtually unchanged in the past twenty-­five years, despite an increase in ­women’s education levels (Bhalla and Kaur 2011). Although middle-­class ­women are becoming more educated, marrying ­later, and having fewer ­children than ­women of previous generations, this shift has not produced the same workforce participation as it did in the 1990s and in other parts of the world (Das et al. 2015). A key ­factor contributing to the pull of domesticity in India is the desire and expectation for w ­ omen to produce families that they should care for in a deeply self-­sacrificial manner (Donner 2008; Radhakrishnan 2011). This expectation of domesticity is not unique to India, but t­ here are some unique political-­economic trends that contribute to its perpetuation ­here.

Domestic Modernity and the Way Forward in India Taking the long view, it becomes apparent that, at regular points since the beginning of India’s in­de­pen­dence, Indian (and specifically Hindu)3 nationalists have elevated a model of self-­sacrificing womanhood as the ideal to which Indian ­women should aspire (Basu 1998; Das 2007; Mankekar 1999; Radhakrishnan 2011 Sarkar 1998). The implication is that ­women can participate directly in the promise of a prosperous, modern India by working exclusively in the domestic sphere (Chatterjee 1989). “Modern” ways of life characterized by a focus on in­de­pen­ dence, wealth, and education are often the unstated referents of w ­ omen’s and their families’ collective aspiration. At the same time, socially mobile middle-­class groups often renew the emphasis on ­women as the guardians of “Indian culture” and “propriety,” which ­people fear are waning with increasing Westernization

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(Chatterjee 1990; Liddle and Joshi 1989; Mankekar 1999). This may be especially true among the tenuously positioned lower ­middle classes, which depend on ­women to raise ­children in a manner that ­will prepare them to be successful in India’s increasingly competitive educational and job markets (for an excellent case study, see Dickey 2002). Modern aspirations are predicated, both ideologically and logistically, on the assumption that at least one w ­ oman ­w ill be at home. ­Women are getting more educated but still choosing to stay at home in urban North India. In such cases, ­women who are perceived to be enacting “traditional” domesticity are in fact enacting a very par­tic­u­lar form of modern (though socially conservative) ideals about what it means to be a ­woman in India, or what I refer to at vari­ous points in the book as “domestic modernity.” This renewed focus on ­women’s domesticity holds remarkable cultural currency b­ ecause it is so intertwined with po­liti­cal, religious, class, and caste identities. The rhe­toric that ­women’s domesticity is reflective of “traditional” Indian culture, which Dr. Kumar articulated so clearly with his explanation of the two classes of w ­ omen in India, belies the fact that it is a relatively recent cultural phenomenon, traceable to the Indian In­de­pen­dence Movement and the Partition of India and Pakistan, during which ­women’s domestic roles ­were elevated as a crucial aspect of India’s emergence as a modern, autonomous territory. Where can we locate the “modern” Indian w ­ oman in the midst of this complicated web of history, gender roles, education patterns, and f­ amily structure? How might notions of care (of the self and of o­ thers) fit in with it? Modernity can mean many ­things, but for the purposes of this book, I take it to mean the pro­cesses that have come together since India achieved in­de­pen­dence in the mid-­twentieth ­century: the rise of international capitalism, the resurgence of a conservative Hindu Indian identity, and the implications for w ­ omen’s gendered identity that are contained therein. My understanding of modernity draws in part on the classic conception supplied by Anthony Giddens, which links large-­scale institutional pro­cesses to individual lives. “One of the distinctive features of modernity,” he writes, “is an increasing interconnection between the two ‘extremes’ of extensionality and intentionality: globalising influences on the one hand and personal dispositions on the other” (Giddens 1991, 1). I accordingly define the “modern” Indian ­woman as a person who in her everyday life engages with large-­scale economic, po­liti­cal, and social currents in India. Despite this very broad conception of modernity, ­there are a few easily identifiable features of ­women’s lives in con­temporary North India that are modern ­because they are the product of the economic, po­liti­cal, and urbanizing changes that have taken place in the country in the last thirty years. Each of t­ hese has crucial implications for ­women’s health that ­will be expanded throughout the book. I discussed them in this chapter, but I ­will revisit them briefly ­here so that readers can refer back to them ­later on.



Seeking Modern India 39

To begin with, w ­ omen who work exclusively in the domestic sphere often bear the full burden of ­house­hold responsibilities that might once have been shared between multiple w ­ omen. ­These are the ­women “sandwiched” between caring for the young and the el­derly, just as Maya was in chapter 1. This is a distinctly modern conundrum b­ ecause it is the product of “missing ­women” in the domestic sphere; as ­family sizes shrink and ­woman are increasingly focused on higher education into their twenties, h­ ouse­holds have fewer ju­nior adult ­women to cover domestic responsibilities than was historically the case. Whereas large extended families once meant that ­there would be multiple ju­nior ­women sharing a single ­house­hold’s domestic workload, now this work often is the responsibility of just one or two ­women. Working into old age is a second distinctly modern feature of womanhood in North India ­because it, too, is a product of demographic and social changes connected to the country’s economic liberalization. Older ­women with sons who do not live at home, or whose daughters-­in-­law work outside the home, may remain the primary domestic worker in a ­family semipermanently, whereas in other times they might have looked forward to “retirement” from domestic responsibility when a daughter-­in-­law married into the ­family (Lamb 2000; Wadley 2002). A seventy-­year-­old ­woman with diabetes, who left a teaching job she loved and moved with her husband to Delhi when their son asked her to help with his young ­children, complained, “Me? I do all the [house]work. Whoever has a working daughter-­in-­law has to do the ­house­work herself. In a big city like Delhi, if anyone comes for a visit, or if someone falls sick, then it’s my responsibility. ­There’s a maid [for sweeping and mopping]. I ­can’t sit ­because of my knees. But besides the sweeping and mopping, I do every­thing.” This f­ amily managed domestic work thanks to the aging m ­ other (who admitted that she would rather still be working as a teacher) and a part-­time hired worker; in earlier times, the joint ­family system would have ensured better coverage of domestic needs by younger w ­ omen and more leisure time for older ­women. This has crucial implications for diseases like diabetes that often emerge l­ ater in life; more than ever, w ­ omen in North India now may be immersed in intensive domestic roles long into their older adult years, roles that leave ­little room for self-­care. A third distinctly modern feature of w ­ omen’s lives in New Delhi is the way in which self-­sacrifice is elevated as a central index of ­women’s propriety, regardless of ­whether or not they work primarily in the domestic sphere. I characterize this as a modern phenomenon ­because although ­women’s domestic self-­sacrifice is rhetorically positioned as an “ancient” or “traditional” Indian value, it in fact was galvanized specifically for purposes of national unity during India’s in­de­ pen­dence movement (Chatterjee 1989). In many parts of the world, ­women occupy self-­sacrificial roles, but the kind of self-­sacrifice that exists in North India is distinct in several ways: first, it has historically been positioned in nationalist and religious discourses as the wellspring of the nation’s morality (Basu

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1998; Chatterjee 1989; Das 2007; Mankekar 1999; Radhakrishnan 2011 Sarkar 1998); second, it enters into public peer-­to-­peer judgment of a ­woman’s and her ­family’s propriety (Cohen 2000; Mandelbaum 1988); and third, the recipients of ­women’s care are not only their ­children, but often also their parents-­in-­law, as in Maya’s and Ranjani’s cases. It would be d­ oing ­women an injustice to categorize their lives as traditional if they work in the domestic sphere or modern if they work outside the home, traditional if they live in a joint f­ amily and modern if they live in a nuclear f­ amily. Most, if not all, of the ways w ­ omen live in urban India ­today are inherently modern, precisely b­ ecause modern cultural referents have become the “unmarked category,” the unstated standard against which every­thing ­else is judged. This informs ­women’s own be­hav­iors and modes of living, even if they do not actively engage in t­ hose “modern” practices in their own lives (Bhatt, Murty, and Ramamurthy 2010). This is in part why identifying the modern Indian ­woman is more challenging than one might expect; given my definition, modernity is as much about engagement with ideas as it is about engagement with certain actions. In chapter 1, I alluded to the idea that questions about what it means to be an appropriate modern ­woman in North India are highly relevant to diabetes ­because diabetes is an illness that requires intensive self-­care. W ­ omen are by no means prisoners of their domestic roles, yet role expectations shape the ways in which they do or do not place their bodies and their health at the center of their priorities. One might imagine ­these relationships as cyclical: ­women’s other-­oriented roles might lead to poor self-­care, which can lead to chronic diseases, which conflict with ­women’s roles ­because they require self-­management; this conflict may lead to “tension,” which leads to more chronic disease, and so on. Th ­ ere are no s­ imple answers ­here ­because the situation in which ­these ­women find themselves is, as it would be anywhere in the world, deeply rooted in social, po­liti­cal, and economic contexts that are much larger than w ­ omen’s own making, yet that still shape their everyday lives. Exploring how this domestic modernity interlaces with ­women’s self-­care is the subject of the chapters to come.

3 • BAL ANCE The Moral and Practical Work of Diabetes Management

The amount of work one puts into diabetes self-­care does not necessarily predict one’s diabetes health. This s­ imple fact has profound implications for lived experience, the negotiation of priorities, and judgments of who is or is not ­doing a good job with their illness. Take Sita, for instance. She awoke at six sharp ­every morning and rushed to drink a cup of hot, milky, sweet chai before walking to her employers’ kothi (mansion) in one of Central Delhi’s most posh neighborhoods. She worked t­ here as a domestic servant. The British colonial government constructed the large, low-­ lying bungalows that dominate central Delhi in the nineteenth c­ entury to ­house officials and diplomats, and a job in this exclusive location placed Sita, a low-­caste rural mi­grant, in contact with Delhi’s elite. But her salary hovered at the low end of what someone might usually make for full-­time domestic work. Her employer justified this b­ ecause Sita and her ­family received a one-­room servant’s quarters as part of the job, but it was in an adjacent neighborhood. Several times a day, Sita had to make the fifteen-­minute walk between the quarters, where she lived with her husband and two c­ hildren, and the kothi. “I make our food in the kothi kitchen ­because we ­don’t have our own kitchen, but my ­children ­aren’t allowed inside ­there,” she explained. The ­children ­were forbidden from entering ­because of the ritually polluting nature of their low Shudra (laborer) caste. At lunchtime, tea time, and dinner time, Sita carried food she had prepared from the kothi to feed her ­family. Sita was forty years old when we met, and she had been diagnosed with diabetes eight years prior, a­ fter she had endured recurring yeast infections, chronic tiredness, and weight loss. Her doctor prescribed an oral diabetes medi­cation, which she took intermittently when she had the money to buy it. “If I have money, I take medicines, if not, I d­ on’t,” she said, shrugging. Her pills cost about 1,300 rupees per month (around 26 U.S. dollars using 2011 conversion rates), which was 41

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over one-­third of her monthly salary of 4,000 rupees. Doctors also prescribed iron supplements to help with Sita’s anemia. Still, her beige salwar kameez hung off of her wiry frame, emaciated thighs jutting out from her loose pants when she sat. Though she wrapped a heavy shawl around her shoulders to ward off the damp Delhi winter, she looked cold as she sat in the plastic chair at the clinic with her arms crossed tightly about her. Sita often skipped meals. She was too busy cooking for every­one ­else. Instead, she drank sweet chai throughout the day to maintain her energy, a practice so common among the poor that ­there is a Hindi axiom for it: “Chai bukh ko marta hein”—­ chai kills hunger (Philip Lutgendorf, personal communication, 2017). “When I’m working, I d­ on’t pay attention to the time, so I d­ on’t eat on time. Sometimes I ­don’t eat anything till four [in the after­noon]. When I’m ­free, then I eat.” She did not finish her workday u­ ntil ­after her employers had eaten dinner and she had cleaned up the dishes, usually around nine in the eve­ning. For someone without diabetes, this be­hav­ior might merely be evidence of hard work; for someone with diabetes, however, it is downright dangerous. In this chapter, I am concerned with what Indian w ­ omen with diabetes do—­ and do not do—to manage their illness on a daily basis. How do structural constraints, such as poverty, shape t­ hese actions? What motivates ­these decisions? And how do ­these illness-­management activities interface with the rest of ­women’s lives? H ­ ere I explore how kinship and structural vulnerability align in specific ways to create situations in which ­women in New Delhi are, or are not, able to enact self-­care. This has significance for transforming how we understand discourses in biomedicine about personal responsibility and morality, and even broader ideas about what makes a “good” citizen in the moral-­medical regimes of late modernity. A crucial determinant of health for Sita was her demanding work schedule, but the dynamics ­were much more complex than that. Sita was also subject to structural in­equality that had long placed her in a position of social and economic exclusion. Born in a village in the state of Odisha (formerly Orissa), Sita and her three ­sisters ­were orphaned as young ­children when her parents died in a vehicle accident. Soon ­after her parents’ death, a traveling salesman came to town selling kitchen goods. He informally ­adopted Sita and her infant ­sister b­ ecause he and his wife had only sons. Sita’s baby s­ ister died shortly a­ fter their move to the salesman’s ­house, and when they fell into financial hardship a few years l­ater, the salesman surrendered Sita to a Christian missionary orphanage in the state capital. Sita studied at the orphanage u­ ntil fifth class, when she was transferred to the main branch of the orphanage in New Delhi. When she was nineteen, the orphanage arranged her marriage to a young man who was also its ward, and within five years they had a son and a d­ aughter. Now both Sita and her husband worked at the kothi, she as a cook and maid and he as a gardener.

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Sita’s blood sugar was not well controlled. She often woke up hungry in the ­ iddle of the night, was always very thirsty, and had to urinate frequently. ­These m are classic symptoms of chronically high blood sugar. She felt so unwell that she had difficulty completing her daily routines. “As I did it [house cleaning] before, I ­can’t do anymore. I ­don’t feel like getting up in the morning. . . . ​­After I do some work, I have to sit down for a ­little while. I did every­thing before, but now I ­don’t feel like d­ oing anything. Every­thing I do, I have to force myself to do.” Just ­after her diagnosis, she had lost function in one of her arms to the point where she could not even lift it to comb her hair. She eventually regained most of this function by “­doing some exercises,” as she remarked rather vaguely. Two years ­later, the same ­thing happened to her other arm. She connected ­these mysterious symptoms to her high blood sugar and said they only went away when her blood sugar went down (though she did not say how she got it to go down). When I tested it, Sita’s glycated hemoglobin was above 13 ­percent, so high that it exceeded the capacity of my mea­sure­ment device. The test corroborated that in the past several months, her blood sugar had been fluctuating well outside advisable limits. Sita’s health was precarious; so was her financial state, and t­ hese precarities w ­ ere intimately linked. Sita dreamed of obtaining secure housing for her ­children, in hopes that it would guarantee them a more stable adult life than she had. A portion of the ­family’s earnings went ­toward paying the high tuition cost of an after-­ school program that her ­children attended, like many ­others in urban India, in an effort to secure any pos­si­ble advantage in the ruthless competition for education and employment. When Sita was working, she said, “I ­don’t think about [my health]. I just want a h­ ouse, nothing ­else, so that my ­children can be well settled.” It seemed that she was willing to do almost anything to attain this dream, including working herself to the edge of her physical limits. Even when she was sick, Sita did every­thing she could to maintain her work schedule. ­After a two-­week bout of illness so severe that she had been physically unable to get out of bed except for the most essential tasks, Sita explained that one reason she avoided the doctor was ­because she worried that if she took too much time off her job, she would be replaced. Sita was prob­ably correct in this, as ­there is no shortage of cheap domestic ­labor in Delhi. Sita’s employers ­were not unsympathetic to her health strug­gles. Yet they relied very heavi­ly on her regular presence for their h­ ouse­hold’s smooth daily functioning. If that was jeopardized, they would simply need to find a replacement. It was remarkable to me to imagine how two families—­Sita’s and her employer’s—­all depended on this one sick individual for most of their domestic care. This dual burden of de­pen­dency seemed to weigh on Sita, too. She said, crying, that she just wanted to die sometimes, and she reported very high levels of “tension” and depression symptoms.1 When asked if she felt hopeless or lonely, she stated, “Yes, that happens. That happens all the time.”

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Liberalism and Biomedical Morality Diabetes was a deadly condition ­until the early twentieth ­century, when American physician Elliot Joslin discovered that death could be delayed by months or even years if patients adhered to strict low-­carbohydrate diets and activity schedules that depended on profound self-­discipline, to the point of near starvation at times (Feudtner 2003). This therapy was extremely controversial among doctors and patients alike b­ ecause many of Joslin’s early patients w ­ ere ­children with type 1 diabetes, and parents had to enforce dietary restrictions that, by ­today’s standards, would be tantamount to child abuse through starvation. Joslin’s archives are filled with heart-­wrenching letters from parents of diabetic c­ hildren describing the terrible effects of carbohydrate restriction they had to enforce. In 1923, Joslin began adding the newly discovered insulin extracted from cow pancreases to the regimen. A ­ fter that point, Joslin’s archives include a series of darkly humorous comics drawn by one of his adult patients that depict a character struggling with the burdens of his diabetes: morning urine tests (glucometers had not been in­ven­ted at that time, so this was the method p­ eople used to mea­sure diabetes control at home), comically g­ iant syringes full of insulin, and interminable lines at the doctor’s office (Feudtner 2003). Insulin revolutionized his treatment, prolonging life and returning many of his patients to almost normal levels of weight and physiological function without the need for such strict diet modifications. Joslin has prob­ably done more than any other individual to establish clear moral associations between diabetes self-­care and good personhood. He wrote in an early version of his Diabetic Manual for the Mutual Use of Doctor and Patient (1919), the first book of its kind, that a patient’s knowledge and understanding of their diabetes is crucial for controlling their disease. But this knowledge alone is not enough. “This is a disease which tests the character of the patient,” Joslin wrote, “and for success in withstanding it, in addition to wisdom, he must possess honesty, self control and courage” (1919, 18). He described his patients who did not follow their diets as “weak-­willed” (23), and remarked that in addition to following a diabetic diet, a person with diabetes could help avoid the progression of the illness in the following way: “Be cheerful and also be thankful that his disease is not of a hopeless character, but a disease which his brains w ­ ill help him to conquer. Keep his temper ­under control and his skin and teeth scrupulously clean” (32). In this medical-­moral worldview, the consequences of seemingly private personal health choices, such as taking one’s medi­cation or watching one’s diet, extend well beyond the private sphere into public realms, where they serve as the basis for judgment of a person’s character as honest, self-­controlling, courageous, appropriately grateful, smart, and even hygienic (or not, if they are unable to keep their illness in control). ­These ideas of blame, hard work, and self-­control in diabetes are characteristic of a Western liberal view of individualized responsibility that imbues biomed-

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icine and has, in recent de­cades, been tied to global capitalism in a form called neoliberalism (Dean 1999; Ferguson 2009). By “neoliberalism,” I mean the widespread macroeconomic doctrine that valorizes private enterprise, free-­market capitalism, minimal government regulation, and the values and consequences that go along with ­these princi­ples (Ferguson 2009). The economic liberalization policies that India ­adopted in 1991, which I described briefly in chapter 2, ­were paradigmatically neoliberal in their focus on cap­i­tal­ist market deregulation and increased private wealth accumulation. This connection is impor­tant ­because it ties the morality associated with diabetes to a broader po­liti­cal and cultural phenomenon that shapes how p­ eople live ­every aspect of their lives—­not just the diabetes part. Neoliberal economic policies have significant practical and moral implications for healthcare b­ ecause they typically involve reducing funding for public ser­vices related to health and healthcare access (Keshavjee 2014; Rose 2007). At the time of this writing, India had one of the lowest per-­capita expenditures on healthcare of any country in the world, amounting to only about 1 ­percent of its GDP (World Health Organ­ization 2016).2 The lack of government ser­v ices effectively shifts responsibility onto the individual to be her own self-­keeper and health promoter, while exonerating formal organ­izations such as central governments from responsibility for their subjects’ well-­being. This might be a fair trade-­off if the government’s uninvolvement in healthcare and other social ser­v ices translated into increased personal freedom, but the social in­equality that blossoms u­ nder global capitalism usually subjugates large sectors of the population, both health-­wise and other­wise, to the ­will of the more power­ful (Keshavjee 2014; Farmer 2001). The conception u­ nder neoliberalism that individuals are responsible for their own health and well-­being involves a series of implicit moral commitments that cast ­people with lifestyle-­related conditions such as obesity or diabetes as moral failures who simply are not working hard enough to take care of themselves (Guthman 2011). This generates strong social stigma ­toward ­those who are unable to achieve biomedical and aesthetic standards of health, even if they are, like Sita, some of the most structurally disadvantaged p­ eople in a given social world. As Seligman and colleagues explain, biomedical models of diabetes management “tend to locate responsibility for diabetes within individuals, in the form of ge­ne­ tics and deleterious life styles, while neglecting the role of structural ­factors that contribute to this health disparity. . . . ​As a result, discourse about the diabetes epidemic among Mexicans seems to have a moral subtext in which flawed personhood is imputed” (2015, 62; see also Mendenhall 2012). In my study, doctors and ­family members praised w ­ omen who w ­ ere able to control their diabetes as self-­disciplined, hardworking, “good” individuals. Meanwhile, ­family and doctors often chastised ­women who ­were unable to control their diabetes, characterizing them as weak willed and hedonistic. This logic only works if we assume that health choices hinge almost exclusively on a person’s commitment to taking

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care of him-­or herself, but not every­one is ­free to make such choices. This calculus seemed entirely irrelevant to Sita, for instance, ­because her health choices ­were so heavi­ly overshadowed by other concerns over which she had l­ittle control.

High Stakes and Low Sugar: Biomedical Management of Diabetes Biomedical descriptions of diabetes and its complications are future-­oriented, motivated by threats of what ­will happen to a person if blood sugar remains uncontrolled (Ferzacca 2000; Seligman 2015). Physicians in my study often pointed out to their patients that, if left uncontrolled, diabetes w ­ ill eventually result in death, e­ ither from an acute episode of very high or very low blood sugar, or from more insidious gradual damage to the body’s systems. ­These potential health complications are in fact quite serious, including loss of vision due to ret­ i­nal damage, loss of kidney function, heart disease, stroke, and loss of limbs or extremities due to undetected infections ­because of peripheral nerve damage. Sita’s loss of function in her arm, for instance, was prob­ably related to diabetic neuropathy, or nerve damage; many other w ­ omen profiled in this book complained of “leg pain,” which prob­ably resulted from similar nerve damage in the feet and lower legs. Information about complications is usually what stands out when a person gets a diagnosis of diabetes, and physicians in my study often appealed to threats of f­ uture disability to motivate their patients to take care of themselves. Diet, medi­cations, and exercise are the three pillars of biomedical management of type 2 diabetes used to prevent or delay ­these complications. Generally, this involves limiting intake of s­ imple carbohydrates and sugars, even t­ hose coming from nonpro­cessed sources such as potatoes, white rice, or fruit. Doctors instruct ­people with diabetes to eat small meals comprising ­whole grains, lean proteins, and vegetables at least ­every three to four hours. In Delhi’s wealthier clinics, patients receive detailed charts from staff dieticians mapping out exactly what and how much they should eat throughout the day. To incorporate variety into ­these regimented diets, ­people with diabetes must train themselves to recognize what a “standard” serving of carbohydrate or fruit looks like across dif­fer­ent food items so that they can make appropriate substitutions (­these are called dietary exchanges). Doctors usually start by prescribing oral medi­cations to reduce blood sugar, but if that does not work, they may prescribe insulin, which must be injected multiple times a day, or administered through a pump worn outside the body. (Pumps are increasingly popu­lar in many parts of the world ­because they eliminate the need for self-­injection and can h­ andle dosage changes easily, though I never met anyone in India with one.) ­People with diabetes also must exercise regularly, and if they are overweight they must lose weight. The doctors I observed

Balance 47

typically recommended that ­women with diabetes walk vigorously for thirty to forty-­five continuous minutes per day. This regimen might appear relatively straightforward at first glance, but it is not. When a person with diabetes exercises, she may need to alter the timing of her medi­cations and potentially the content of her diet to avoid an episode of low blood sugar. Blood sugar can change very quickly, and it can be difficult to feel when one’s blood sugar is high ­unless it becomes extreme. ­People can detect low blood sugar more easily b­ ecause it produces headaches, fatigue, and shakiness. To take some of the guesswork out of blood sugar management, as I noted earlier, doctors encourage a person with diabetes to purchase a glucometer and test strips. Very few w ­ omen with whom I worked had access to this technology, though, so for most, t­ here was indeed a lot of guesswork g­ oing on. Sita, for instance, would have had to choose between buying glucometer test strips and buying her medicines. Facing the choice about ­whether to pay for tests or for drugs that can at least partially correct one’s health prob­lems, I would do as Sita did: buy the medicines whenever I could afford them. Even a­ fter foregoing the glucometer and test strips, ­there ­were times when she could not afford the medicines. ­There is much more at stake in diabetes than just t­ hese facts of physiological damage. It is often said that diabetes steals the good years of life that a person has left ­after receiving a diagnosis ­because it requires such strict management (Feudtner 2003). The illness is notorious for interfering with ­people’s life routines ­either b­ ecause of the intensive efforts required to maintain stable blood sugar, or ­because of health complications associated with not maintaining it. ­Those who engage in strict management often find the perpetual monitoring of their diets, medi­cations, and exercise all-­consuming. For ­those who do not, like Sita, the uncertainty associated with symptom fluctuations leaves one with the constant feeling that “any day has the potential to be a bad day,” as anthropologist Lenore Manderson explains of her female in­for­mants with endocrine disorders that produce symptoms similar to t­ hose of diabetes (2010, 103). This perpetual uncertainty can itself be psychologically devastating, even if “bad days” are not especially frequent. The overwhelming message from biomedicine is this: the stakes are high in diabetes self-­management, and ­those who do not conform have only themselves to blame. Joslin’s early writings on diabetes and control exemplify this blaming discourse. As I suggested earlier, this is problematic b­ ecause it overlooks the fact that some ­people have very few realistic options for meeting the self-­care demands of good diabetes management. P ­ eople like Sita do not fit into the role of the neoliberal subject conjured in much biomedical critique ­because they lack the resources that might enable them to choose in the first place (Guthman 2011). And when they are unable to manage their diabetes, w ­ omen like Sita typically face threats from their doctors and families about the physical health complications that may ensue from their negligence, as well as implied threats to their moral standing

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as ­people who “do the right t­ hing.” In India, indigenous categories of “bad blood” are often thought to be responsible for illnesses with moral and stigmatizing connotations, such as leprosy (Barkataki, Kumar, and Rao 2006; Barrett 2005). But the modern “badness” of diabetes draws on a dif­fer­ent moral code altogether, one focused on flawed commitment to one’s duties and on irresponsible self-­indulgence. Usha, a sixty-­year-­old ­woman who attended a monthly health camp where ­people with diabetes could get a f­ ree checkup, had experienced this firsthand. “[The doctor] yells at the ­people whose sugar is not in control. Every­one who comes h­ ere is scared of him. They ­can’t speak in front of him. He gets very angry,” she said of Dr. Saxena, a se­nior cardiologist and diabetes physician who served as the head of the camp. “If he says something and you bring up something ­else then he gets very angry and says, ‘If y­ ou’re a doctor then why did you come to me?’ Like, if he suggests one medicine for me and I say I’ve heard of some other medi­ cation, he says, ‘Well, go sit at home and write your own prescriptions!’ ” This interaction between Usha and Dr. Saxena highlights both the victim-­ blaming aspect of biomedical diabetes management and the broader gender and power relations inherent in most doctor-­patient interactions. In North Indian socie­ties, social authority is clearly delineated along the lines of age, gender, caste, and profession (Beteille 1990; Derne 1995; Dumont 1966; Liddle and Joshi 1989; Marriott and Inden 1977; Ray and Qayum 2009). The high status of physicians in this hierarchy certainly ­shaped ­women’s interactions with their doctors, and perhaps limited the amount of information they felt able to disclose about their personal lives, as Dr. Kumar suggested in chapter 2 when he said that lower-­class ­women ­were reluctant to discuss their sexual or reproductive health. Everyday doctor-­patient interactions reinscribe this hierarchy when doctors refer to their patients using the informal word for “you” (tum), while patients invariably refer to their doctors using the honorific form (as in “yourself ”; aap), the -­sahib suffix, or the En­glish titles “Sir” or “Madam.” Th ­ ese gender and status differentials may mean that male doctors are unable to access the full range of their female patients’ experiences. ­Because of their very high social status, physicians’ endorsement or criticism can be particularly power­ful. In a semipublic setting like the health camp, where ­there are many ­people in the same room, their scolding can be very demeaning. “He’s a good doctor [but] you ­can’t interrupt or contradict him,” commented Usha. “You have to say, ‘Yes, yes, sir,’ ” she said, folding her hands in her lap and bowing her head in mock deference. Medical anthropologists working in other parts of the world have reported that patients dread moral judgment from their doctors so intensely that they w ­ ill sometimes change their diabetes be­hav­iors just before an appointment to quickly (but temporarily) improve their blood sugars—­ for instance, eating less or taking too much medi­cation in the days leading up to a checkup (Broom and Whittaker 2003; Naemiratch and Manderson 2006).

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Moral judgment comes from ­family members, too. As the case of Manjot ­later in this chapter w ­ ill demonstrate, f­ amily members may feel slighted when a se­nior ­woman in the ­house­hold does not take care of herself, ­because then she is unable to take care of them to the extent they are accustomed to. This places ­women in a double bind: they are expected to maintain intensive self-­care while still fulfilling culturally significant roles of family-­oriented domestic nurturance (Radhakrishnan 2011). Sita was negotiating this moral territory when we met, caught between the imperatives of her disease and the imperatives of her life as a full-­time domestic-­ service person whose income supported her ­family. Given her limited resources, the latter set of concerns almost invariably won out. Sita had no way to monitor her blood sugar and could not always afford her medicines. She was aware of the fact that p­ eople with diabetes should change their diets, but this was not where she focused her limited energy. “I think, ‘I’m ­going to die anyway, so I might as well eat what I like,’ ” she said, shrugging her narrow shoulders. At the charitable clinic where she only went when she was too sick to put it off any longer, ­there was so much need that the doctor rarely spent more than a few minutes with each patient. Consequently, most patients ­were operating with only a sliver of the large body of knowledge required to manage one’s diabetes effectively—­the “brains” that Joslin referred to in his 1919 manual as essential for diabetes care. The world of painstaking biomedical self-­management was well out of Sita’s reach and the reach of many other ­women in my study, like Usha. Such ­women ­were by no means in t­ hese situations through any fault of their own: it was not Sita’s fault that she was born in a small village to low-­caste parents, nor that she was orphaned at a young age, nor that the orphanage deci­ded to get her married before she had had a chance to get much education. ­These structural disadvantages set Sita on a course that would profoundly shape her adult life, leaving her few opportunities for work besides domestic ser­vice, and few options for seeking or acting on diabetes treatment once she was diagnosed. Po­liti­cal and economic constraints intersected with gender and power relations in ­these ­women’s lives to create tracks of relative advantage or disadvantage that persisted throughout their lives. This fact underscores the flaws in liberal models of biomedical personhood that so heavi­ly emphasize individual control of illness without accounting for the social circumstances that constrain ­those individual choices. The group of wealthy ­women in my study experienced a categorically dif­fer­ ent world of life chances and diabetes-­management possibilities. Remarkably, despite their more comfortable lives and their greater access to the technologies of diabetes control, the elite did not necessarily have better health outcomes than the poor, nor w ­ ere they protected from the blame that lower-­status ­women often faced for their uncontrolled diabetes. This, too, challenges the liberal ideologies inherent in biomedicine that suggest that personal investment in hard work w ­ ill

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always lead to better health outcomes. Manjot, whom I introduce below, was one such individual.

Illness, Identity, and Life Disruption “Look, I am highly educated,” began Manjot, holding up her hand in a rather defensive “stop” gesture, as if she w ­ ere guarding herself against assumptions I might make about her character based on her prob­lems with diabetes. She was, indeed, defensive about her prob­lems with the illness. A wealthy sixty-­two-­year-­ old Punjabi w ­ oman who spoke in polished, British-­accented En­glish, Manjot had been wrestling with declining health since being diagnosed with hypertension at age thirty-­one. Then, fourteen years ago, her doctor diagnosed her with diabetes. For the last six months, she has been sleeping with a CPAP (continuous positive-­ airway pressure) machine to treat sleep apnea, a condition of interrupted breathing during sleep. Manjot was clinically obese, and she had arthritis and knee prob­lems that prevented her from being physically active, so she was having a lot of trou­ble losing weight. Her thinning hair was knotted in a messy bun, and unlike most married ­women of her age and wealth, she wore no makeup or jewelry, perhaps b­ ecause she was a ­widow—­a fact that profoundly ­shaped her outlook on life as well as her diabetes experience. I first met Manjot during eve­ning drop-in hours at a private diabetes clinic, where she had come b­ ecause she was justifiably concerned about her many health prob­lems. Manjot’s glycated hemoglobin was 10 ­percent—­not as high as Sita’s, but still well above the recommended level of 7 ­percent for optimal diabetes control. She complained of chronic leg pain (again, as was the case for Sita and o­ thers who mentioned this symptom, it was possibly related to neuropathy) and trou­ble sleeping. “My sugar is always high, and ­every day I feel that maybe this is the last day I ­will live,” she complained. Although she claimed that she ate a very limited diet, took her medi­cations religiously, and checked her blood sugar regularly (she was, in fact, one of the few ­people in my study who owned a glucometer), blood sugar control eluded Manjot. “Nobody knows, and I ­don’t know, why my sugar is so high. . . . ​It’s so high, even though I am now taking three times the amount of medicine [that I used to].” Manjot’s C-­reactive protein3 and Epstein-­Barr virus antibody levels w ­ ere extremely elevated, some of the highest I saw in the entire study.4 They indicated that her chronic physical and psychosocial stress ­were measurably increasing her risk of cardiovascular disease and compromising her immune function, respectively. Manjot, in short, was in remarkably poor health. Two months ­later, I met Manjot at her home. Whereas Sita was a servant in a Delhi mansion, Manjot owned one—­a bright-­blue stucco estate surrounded by a meticulously manicured English-­style garden. To get to it, one had to drive over a dusty, potholed public dirt road so nearly impassable that I was unsure my auto-­ rickshaw could make it. The mansion’s front doors opened onto a ­grand two-­story

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circular foyer with a butterfly staircase, a crystal chandelier dangling over the inlaid marble floor, and decorative plaster Corinthian columns ringing the walls. One of Manjot’s servants showed me into a sitting area off the main foyer. When I sat down, the outsized scroll-­armed couch almost swallowed me up. I scooted awkwardly t­ oward the end of the seat so my feet could touch the floor. Manjot and her youn­gest ­daughter, a striking twenty-­nine-­year-­old ­lawyer, appeared a moment l­ater. ­These two ­women ­were the only full-­time occupants of the cavernous mansion; the rest w ­ ere servants, most of whom lived on the grounds. When I complimented the ­house, Manjot rather wistfully told me that her husband had designed it, hand-­picking ­every fitting. Being in the ­house he built for her made her feel close to him. Th ­ ere, she talked to him. “He is still ­there with me. I never use this word ‘dead’ for him,” she said. I soon learned that Manjot was still actively grieving for her husband. “I spent thirty-­four years with my husband, and it was as if we spent only thirty-­four days. It was so charming and good,” she said, smiling at the memory of him. “My husband was so courteous, formally [she means politely] spoke, formally ate, formally slept. He took care of me. That was with me for thirty-­four years. Every­one used to say, ‘You w ­ ill not grow old [­because your love ­will keep you young forever].’ But I have, in ­these last two years.” The theme of blame recurred throughout Manjot’s narrative about her diabetes. Whereas Sita did not have to deal with blame from her ­family ­because neither they nor she w ­ ere particularly familiar with the dictates of biomedical diabetes management, Manjot was familiar enough with the prob­lems and priorities of managing the illness to know that something was ­going wrong, despite her best efforts. She carried a lot of self-­blame. Her ­daughter and her doctor blamed her, too. ­Every day ­after she ate breakfast, Manjot would ask her ­daughter to check her postmeal blood sugar ­because she did not like pricking her own fin­ger. “When I call my ­daughter to check my blood sugar, she asks me why it’s so high. . . . ​She says, what did I eat? And she starts fighting with me about it. . . . ​She starts shouting at me, like, what did I eat?” Manjot paused, then asked rhetorically, “Am I the ­enemy of myself? I d­ on’t want my blood sugar to be so alarmingly high. I feel bad that my youn­gest child is so stressed ­because of me. I’m tired of this illness! In the morning I get up and say to God, ‘­You’ve made such a big world, y­ ou’ve made every­thing. But I d­ on’t want this illness.’ I get very angry.” Manjot and her d­ aughter had a close relationship: the d­ aughter stayed nearby during our entire two-­hour interview, described how she tried to help her ­mother take care of herself, and defended her against their other relatives, who exploited Manjot’s generosity. But she still blamed her ­mother for her poor health (Weaver 2016). Manjot’s doctor, too, blamed her. “That day [when I met you] the doctor was shouting, ‘Why your sugar is so high?’ He was shouting! He said, ‘­Don’t think it ­can’t harm you at any time. Catch hold of this [diabetes] in your hand, other­wise it ­will eat you up,’ he said! He told me, ‘Take care of yourself. Drink a lot of ­water.’ ”

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Manjot felt she had no control over her blood sugar, despite the fact that she tried so hard, and this made her extremely anxious. “My latest fear is whenever I put my blood in the glucometer, my heart beats fast. I am more scared of it than anything e­ lse in my life ­because I ­don’t know what to do. I get depressed when I see my fasting glucose,” she complained. “What do I eat in the eve­ning? One chappati [flat bread], then three tablets, and how can my sugar go so high? It comes so high, and I c­ an’t ignore it being so high right in front of me like that. I try to divert myself by listening to ­music, singing, or watching TV.” When I opened my bag to retrieve my blood-­testing equipment, Manjot became shaky and uncertain. I assured her that she need not do a blood sugar test ­unless she wanted to. Glancing sideways at the glucometer, she took a deep breath and said, “No, go ahead and do my blood test.” As I was collecting the sample she exclaimed, “My heartbeat is g­ oing so fast. I’m scared! How much is my sugar? This is my ­enemy!” “It’s 243,” I said, ­after pausing to read her results. This was indeed high; blood sugar should ideally not cross 180 mg/dL, even ­after a meal. “It’s 243? Now?! Look how high my sugar is all the time! My sugar is so high, it’s so high, what can I do?” she said, her voice growing shrill as she became increasingly frantic. “My sugar never comes down. If I’ve just taken a l­ittle bit of stress, like this phone call just came, it goes up right away.” Switching to Hindi she said, worriedly, “Yeh diabetes mere haath mein aa nahin rahi hein [literally, This diabetes i­sn’t coming into my hand; I c­ an’t catch hold of this diabetes],” almost as if she w ­ ere responding directly to her doctor’s demand that she “catch hold of this in your hand.” She meant that although she was grasping for solutions to her diabetes, she was unable to actualize the control that she, her ­daughter, and her doctor ­were so invested in her attaining. At times, Manjot said, she felt that her life had become so limited that it was no longer worth living. This declaration seemed to catch her d­ aughter’s attention. She had been sitting in the room with us the entire time, completely absorbed with her smart phone, but at this comment she looked up abruptly and said, flicking her hand dismissively, “­Mummy is just being dramatic. She always says ­things like this.” Yet my overall impression was that Manjot’s oblique reference to suicidal thoughts might hold more significance than her ­daughter afforded it. Perhaps by vocalizing this dramatic piece of information, Manjot was attempting to elicit a sympathetic response from her ­daughter. She did not get much sympathy, however, ­either from her ­daughter, from her doctor, or from her extended f­amily (Weaver 2016). At stake in Manjot’s life ­were questions of legitimacy, blame, and illness (Freidson 1970; Parsons 1951). As disability-­studies scholar Rose Galvin (2002) notes, being a chronically sick or disabled person pres­ents an uncomfortable contradiction in neoliberal environments: “In many western nations, it is becoming less acceptable to enter and remain in a physically incapacitated state: it clashes too uncomfortably with the image of the ‘good citizen’ as someone

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who actively participates in social and economic life, makes rational choices and is in­de­pen­dent, self-­reliant and responsible.” Manjot, too, strug­gled with the implied deficit of character that came along with her inability to control her diabetes. “I d­ on’t want crores [tens of millions] of rupees,” she concluded. “I’ve got so many ­things, but I ­don’t need [them]. I want health. I want peace of mind. I want rest,” she complained. Despite the large differences in their personal backgrounds and health-­ management efforts, Manjot’s and Sita’s physical and m ­ ental prob­lems ­were commensurate in terms of their severity. Sita worked in a kothi, taking care of her employer’s ­family and her own. Manjot employed ­people like Sita in her own kothi. Sita spent most of her time outside her home; Manjot rarely left hers. Sita was desperately poor; Manjot, as she put it, “can afford, thank God, every­thing.” Manjot attended a well-­reputed private diabetes clinic in Delhi where she paid 500 rupees per consultation and received one-­on-­one instruction about diabetes management from her doctor. Sita went to a charitable clinic where she paid 20 rupees for a consultation, which afforded her very ­little time to talk to the doctor and no ability to obtain diabetes-­management education. ­Because Sita had no education, it would have been challenging for her to glean much from the diabetes-­ education materials she might have gotten from her doctor. Manjot had two master’s degrees. The question becomes, then, why ­were health outcomes so similar for ­women with such starkly dif­fer­ent personal histories, social statuses, and access to resources? In the next section, I ­will address what accounts for ­these differences.

Work, Health, and the Responsibilized Self-­C are Incorporating diabetes into one’s life takes work, regardless of w ­ hether or not the person engages directly in diabetes-­management tasks of the kind Manjot did (checking her blood sugar, laboriously watching her diet, e­ tc.). Whereas ­people often assume that the severity of a lifestyle-­related illness like diabetes has to do primarily with how hard ­people work at managing it, Sita’s and Manjot’s experiences suggest that this may not be the case. Both w ­ omen had quite advanced diabetes. Only one, however, engaged in much specifically diabetes-­related work, and it did not seem to put her at any advantage regarding her health. One way to make sense of the similarities and differences in Manjot’s and Sita’s experiences is through an analy­sis of three lines of work they engaged in to manage their chronic disease (Corbin and Strauss 1985). ­These include illness work (the tasks directly involved in the management and prevention of symptoms, such as eating special foods and taking medi­cations), biographical work, and everyday-­life work. Biographical work refers to the emotional and logistical work of rebuilding an identity with a chronic disease. Everyday-­life work refers to the mundane logistics of keeping a life g­ oing, such as h­ ouse cleaning and childcare. The latter two

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forms of work are rarely accounted for by biomedical models of illness management and often do not get acknowledged as “real work,” even by ­those performing them. The convergence of Sita’s and Manjot’s diabetes outcomes has to do with the fact that each was focused on dif­fer­ent lines of work, and was d­ oing so ­under dif­ fer­ent circumstances. This rather paradoxically produced similar health outcomes. Manjot’s narrative centered around the biographical work involved in refiguring her life around her husband’s death and her declining health, and it was deeply marked by the illness work of managing her diabetes. Th ­ ose efforts punctuated her everyday activities to such a ­great extent that they became the organ­izing princi­ple around which the rest of her life revolved. Despite maintaining a time-­ and space-­controlled routine, blood sugar control eluded Manjot. It might have been that Manjot was, as her ­daughter intimated, cheating on her diet when ­people ­were not looking. Or, it might have been that Manjot’s high levels of stress ­were interfering with her body’s ability to respond to the treatments she was so assiduously pursuing. I was never able to figure out exactly why Manjot was in such a health crisis, but it was clear that her illness work failed to produce the result that she and every­one ­else seemed to expect. Manjot was a remarkably responsibilized self-­carer; she worked very hard to take care of herself. This did not result in better health, but Manjot still attempted to uphold her position as a good citizen-­subject and compliant patient by trying, and trying very publicly (in the sense that she continually drew rhetorical attention to her efforts). She was able to work so hard at this, at least in part, ­because she was wealthy: she was not dependent on income from employment to keep her ­house­hold ­running; she was easily able to afford all her medi­cations, medical apparatus, and physician visits; and she did not need to be concerned with disability in performing h­ ouse­work ­because she retained a large staff of domestic servants. Manjot theoretically had money to offset many of the consequences of her poor health, but, as she herself commented, one cannot buy good blood sugar control. She nevertheless felt slighted when p­ eople like her d­ aughter failed to recognize her diabetes self-­work and her considerable expenditures. No one was buying it, however: her ­daughter “shouted” at her in the mornings when she saw how high Manjot’s blood sugar was, and her doctor blamed her as well. Ultimately, she was still subject to the social judgments associated with her poorly controlled diabetes even though she was trying. Sita’s life, by contrast, involved very ­little overt illness work. Instead, Sita was consumed by the everyday-­life work she performed for both her ­family and her employers out of economic necessity. She could never hope to be a successful patient; for her, a diabetes self-­care role like Manjot’s was completely financially and socially unattainable. So was even the hint of a socially legitimized sick role. She could not afford sick days; instead she had to adjust her work pace to accommodate her failing health. ­There simply ­were no ­viable alternatives for

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Sita. However, in her own way, she was succeeding as a neoliberal subject: she maintained middle-­class aspirations and a remarkable work ethic that, she hoped, might even someday propel her ­children into a middle-­class existence. For Sita it was this desire, rather than attaining some abstract diabetes-­management goal, that served as an organ­izing princi­ple of everyday life. Sita escaped the blame for her illness that Manjot had to endure, but she still had very poor health. Corbin and Strauss (1985) never explic­itly made the connections I am suggesting ­here between illness work, blame, and the Western liberal values of individuated personhood embedded in biomedicine, but ­these are two sides of the same ideological coin. ­Because ­labor is the activity through which market value is produced, ideas about work are central to liberal conceptions of an individual’s worth. Through their work, p­eople in cap­ i­ tal­ ist socie­ ties demonstrate self-­ sufficiency, self-­discipline, ingenuity, and brains—­uncoincidentally, the personal characteristics that Elliot Joslin so valued, and that are privileged in many capitalist-­driven socie­ties ­because they produce tangible economic value. As early as 1951, sociologist Talcott Parsons described how “sick roles” are a form of social contract: once a person is deemed legitimately sick by a social authority such as a doctor, they are granted a temporary exemption from normal social duties. However, to maintain legitimacy, the sick person must engage in conscientious, vis­i­ble, sustained efforts to get better. Other­wise, they are at risk of being judged complicit in their own poor health and of receiving no sympathy (nor exemptions from usual duties) for their poor condition. Earlier I introduced the idea that ­there are moral judgments attached to biomedical ideas about diabetes control; as Parsons (1951) predicted, this judgment often pivots on w ­ hether or not a person appears to be working hard enough to manage their illness—in Corbin and Strauss’s (1985) terms, ­whether or not they are performing sufficient illness work. Biomedically managed diabetes is perhaps the neoliberal illness par excellence ­because it depends so heavi­ly on individuals strictly regulating their everyday be­hav­iors in capitalistic po­liti­cal and economic systems that depend on ever-­ increasing consumption (Ferzacca 2000). It requires its sufferers to be imbued with responsibility—as Ferguson calls it, “responsibilized”—to a g­ reat degree, exercising individualism, work ethic, rationality, self-­discipline, and a focus on achievement in their diabetes self-­care in the very environment where it might be most difficult to do so (Ferguson 2009; Ferzacca 2000). Th ­ ose able to adhere to this moral and medical regime get rewarded by society (at least in theory) with better health, fewer health-­related costs, and validation from ­others, including their doctors. This work-­reward equivalence is fundamental to Parsons’ classic conception of the social contract of the sick role (1951). The moral values that society attaches to ideas of control, health, and self-­care are a prob­lem for two reasons. First, they start from the assumption that all ­people have roughly the same options available to them—in other words, that they

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are ­free to make the choice e­ ither to care for themselves or not to do so, that it is their own actions that e­ ither give them access to the sick role or not. But as Parsons himself acknowledged, such roles are not equally available to every­one ­because of structural f­actors like socioeconomic in­equality. It seems unrealistic to claim that e­ ither Sita or Manjot could control her blood sugar if she just tried harder. A critical political-­economic perspective underscores the fact that in spite of the work they did (or did not do) around their illnesses, Manjot and Sita suffered with diabetes in part ­because of reasons out of their control. Second, the morality of biomedicine is problematic ­because it glosses over the work that ­those who stand in “violation” of that code perform ­toward dif­fer­ent, but still impor­tant, goals. Corbin and Strauss (1985) challenged the cap­i­tal­ist conception that the only “real” work is eco­nom­ically productive work, and the parallel idea embedded in biomedicine that the only real illness work is that which results in controlled biologies. The work that Manjot and Sita did was largely invisible to their doctors ­because it failed to translate into good diabetes control, but they ­were nevertheless engaged in all kinds of work. By focusing on the structural f­ actors that shape the range of options ­women have for their health, I do not mean to suggest that p­ eople can never be held responsible for bad health. A ­ fter all, p­ eople do make choices e­ very day that e­ ither enhance or detract from their well-­being—­even ­those like Sita who have the odds stacked against them. Sita could have made sure to eat on time and drink less chai. She could have chosen to buy her medicines ­every month instead of sending her ­children to a tutor (maybe, if her husband had agreed). Manjot could have sought help for the m ­ ental health prob­lems that seemed to be compromising her diabetes care and her larger quality of life. ­There is a balance to be struck between the focus on structural and individual determinants of health, not one that Corbin and Strauss’s theory of illness work, Parsons’ sick role, or neoliberal theories of the responsibilized citizen can fully account for by itself. Together, however, they illuminate the competing priorities each ­woman must accommodate in her life, and the structural ­factors that limit the possibilities available to them as they make ­these negotiations.

“Good” Diabetes Management and Daily Life: Kalpana and Indu What about ­those ­women for whom diabetes is not a major strug­gle? ­Here I introduce two w ­ omen whose experiences provide a counterpoint to Sita’s and Manjot’s. ­Women who live well with diabetes are also the focus of chapter 6, where I explore more critically what “living well” with diabetes means. Kalpana was one of the oldest ­women who participated in my study. At seventy-­ eight, she was somewhat frail and walked with a slow shuffle. The f­ amily was well off, but she insisted on ­doing her own laundry by hand to “keep fit.” She was very

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proud of this feat. Kalpana was not overweight, but she suffered from several conditions often related to overweight: type 2 diabetes, hypertension, and heart disease. She was warm and kind, smiling and joking throughout the interview. “Hey, close the curtain,” she exclaimed rather bawdily, chuckling as she undid her pale-­pink salwar pants to show us a large bruise on her inner thigh. She hugged me when I left at the end of the interview. Kalpana had no formal education, but she was worldly all the same. She and her husband had fled, penniless, from Pakistan to India as young adult Sikhs during the bloody 1947 Partition of the two countries. Over time they established a well-­reputed tailoring business in central Delhi that her two adult sons still ran as the f­ amily’s main source of income. Kalpana was a w ­ idow when we met, but she was never alone; she lived in a wealthy, leafy neighborhood in South Delhi with her two sons and their wives, two grand­sons and their wives, and three great-­ grandchildren. She had two other c­ hildren living abroad, a son in the United States and a ­daughter in Ireland, and she had been to visit them several times. She described her son’s h­ ouse in the United States as “a proper kothi” with four large bedrooms, but she did not like visiting ­there ­because her son and daughter-­in-­ law left her at home alone all day while they ­were working. Roopa, Kalpana’s granddaughter-­in-­law, jumped in, “Actually, the way ­people are open ­here to talk— [­there] they have such big ­houses, but ­there was no one ­there to talk to her.” Roopa was one of the newer additions to the f­ amily. Kalpana had noticed her praying at the local gurdwara (Sikh t­ emple) one day and initiated the pro­cess of arranging a marriage with her grand­son. In India, older ­women often serve as marriage brokers for their sons or grand­sons. The match was a success, and although Roopa was educated with a B.A. in fine arts, when they married, her husband requested that she not work outside the home and instead serve as Kalpana’s full-­time companion. Roopa agreed, and when I met her, she accompanied Kalpana to all medical checkups, administered her insulin injections daily, and took her out at five ­o’clock ­every eve­ning for a walk to the gurdwara. “Nowadays ­there is no one to care for the older ­family members, and they tend to get more ill and depressed,” Roopa cheerfully explained. “­We’re ­here, so of course we help her, ­because it’s good to have an elder in the h­ ouse­hold as a guide.” Throughout my visit at their home, Roopa sat at Kalpana’s side. ­There seemed to be strong affection between the two ­women. Kalpana also had a doting son and a servant who took care of her specific food requirements. “He makes light food for me and knows that urad dal [a type of lentil] gives me gas,” she explained. Kalpana’s son ate breakfast with her ­every morning and checked her blood sugar before and a­ fter the meal (along with Manjot, Kalpana was one of the few w ­ omen in the study with a glucometer). When we began talking about diabetes management, he fetched a slip of paper with “­Mummy Sugar” scrawled across the top, on which he had dutifully recorded her pre-­and postbreakfast blood sugars ­every day for the last several days. When

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I tested her glycated hemoglobin, it was 7.1  ­percent, right at the level recommended for the best long-­term health for p­ eople with diabetes. Kalpana could not explain the meanings of her blood tests, but she was aware of the potential complications of diabetes. “Sugar-­related prob­lems happen like this—­the kidneys go bad, you become bedridden. . . . ​I ­don’t understand it all. I just know that I ­don’t want to become bedridden, that’s all. My son tells me if [my blood sugar is] okay.” This lack of knowledge did not put Kalpana at risk in the same way it did for Sita, from the beginning of this chapter, b­ ecause Kalpana had dedicated ­family members who could step in and help her. Kalpana’s daily routine was ­simple, consisting mostly of leisure activities punctuated by meals, prayer, and f­ amily time. “I get up at six and pray. I pray for an hour, then my son comes and sits with me. We sit and watch the news. Then the servant gives me tea, and I have breakfast: cornflakes with a spoonful of nuts. . . . ​ At two, the servant comes downstairs and makes lunch. [I eat lunch] at two-­thirty. I go to the t­ emple in the eve­ning. For lunch I d­ on’t eat too much. I have light food, like moong dal or malke dal [types of lentils], and they make karela [­bitter gourd, a vegetable known in Ayurveda to be good for diabetes] for me. I have very thin rotis [flat breads]. I eat one and a half and give the rest to the birds. It’s always been my custom to take God’s name and give food to them.” By this, Kalpana meant that she offered food to birds as a religious practice—­a common ele­ment of Sikh worship, b­ ecause, like many other South Asian religions, Sikhism holds that all creatures have souls that are part of the divine. At the time we met, Kalpana had been living with diabetes for about ten years, and her f­amily had clearly become accustomed to managing her health. ­After visiting for several hours, I left with the impression that their ­house­hold was a well-­oiled machine. Each ­family member had a specific responsibility, and ­because ­there ­were so many of them, no one ever had to work alone. This kind of joint ­family arrangement can go terribly wrong—­recall Maya from chapter 1, for instance, who was essentially trapped in her in-­laws’ ser­vice ­after her husband’s death. In Kalpana’s f­amily, the dynamic was totally dif­fer­ent; every­one appeared comfortable and content with one another, and no one had to bear full responsibility for sustaining the h­ ouse­hold. Kalpana radiated that contentment both in her kind manner and in her physiology, which was remarkably stable given her age and the fact that she had been living with diabetes and other chronic diseases for a de­cade. ­Family support was crucial to Kalpana’s diabetes management. Home-­based care for elders is—or at least was once—­quite common in India (Bali 2001). It is grounded in values such as long-­term reciprocity and extended ­family living, which Roopa was referencing when she said, “Of course we help her b­ ecause it’s good to have an elder in the ­house­hold as a guide.” In this system, ­people understand later-­life care as a sort of repayment for the sacrifices parents made when

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raising their c­ hildren (Bali 2001; Cohen 2000; Vatuk 1990). In 2007, the Maintenance and Welfare of Parents and Se­nior Citizens Act established this custom as a ­legal right. ­Under the act, se­nior citizens, parents, and grandparents can claim financial support from their c­ hildren (or the heir to their property if they have no ­children) if they are unable to support themselves on their own income. As part of this family-­based retirement, Kalpana had not only withdrawn from major ­family decisions, but had turned control of her personal health over to ­others.5 Ethnography among older North Indians suggests that many w ­ omen experience ­these years as a restful time in which they are allowed to pursue their own interests and move outside the h­ ouse in ways they w ­ ere never before able to do (Menon and Shweder 1998; Vatuk 1995), and this was what Kalpana was d­ oing. She reported ­little disability related to diabetes and no “tension,” depression, or anxiety. ­Women’s lack of access to ­these later-­life roles can be a significant source of strife ­because it upsets expectations they may have held for de­cades about what old age should be. Kalpana was aware of her privileged position ­because it contrasted dramatically with her own ­sister’s, who had also had diabetes and had died of diabetes-­ related complications many years prior. “What’s written in your fate, you have to endure it,” she began the story. “Now at this age [seventy-­eight]—my older s­ ister, she had a lot of sugar. She’s ten or twelve years older than me.” Kalpana and her ­sister had, of course, ceased to live in the same h­ ouse­hold as soon as they married and moved into their husbands’ homes. “She died b­ ecause of this disease. The poor ­thing was very poor, and ­there was no one to take care of her. She ­couldn’t get good treatment. She lived in a village.” The lost s­ ister whose fate had been so dif­fer­ent from her own reminded Kalpana of how unique her situation truly was. This kind of strong f­ amily support was remarkable, but it was not a necessary precondition for ensuring diabetes success. Indu was another ­woman in my study with remarkably good blood sugar—at 6.9 ­percent, her glycated hemoglobin was about the same ideal level as Kalpana’s, but unlike Kalpana, she had much less money and got virtually no support from her f­ amily. A lower-­middle-­class homemaker with a high school education, Indu was diagnosed with diabetes the year before we met. She was born in Punjab state as one of ten siblings and migrated to Delhi in 1986 ­after her marriage. We met at one of the monthly camps like the one Usha attended, where ­people went en masse to get their blood sugar tested for ­free and sometimes got reprimanded publicly by their doctor. Afterward I arranged to visit her at home. Her apartment was a dark, ground-­floor unit with whitewashed walls covered in yellow ­water stains from the last monsoon, which had been unusually heavy. She shared this space with her husband, son, and father-­in-­law. When I arrived, Indu’s el­derly father-­in-­law, for whom she served as the main caretaker, was sitting listlessly on a cot in one corner. Before

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I could introduce myself, he shuffled out of the room, looking a bit confused and smelling noticeably of urine. I did not ask about his health b­ ecause I did not want to be disrespectful. I did, however, ask why Indu had only one child—­a very rare occurrence among the w ­ omen with whom I worked—­and she repeated, with a knowing smile, the government’s well-­known population-­control slogan: “A small ­family is a happy ­family.” Although she never explained directly what she meant by this, she was intimating that she used birth control; the public health campaign associated with the slogan was a birth-­control campaign. As we sat in her combination living room and dining room, Indu explained, “I used to get tested for sugar e­ very six months. No one in my f­ amily had it, but . . . ​ I just felt like I might have sugar, b­ ecause I was thirsty a lot and had to urinate a lot. ­These ­things happen from diabetes. I am educated; I read books and I keep reading about diabetes. Articles come in the paper about it all the time. It comes on TV too.” ­After several years of getting herself regularly tested, sure enough, she had fi­nally come up positive for diabetes in the previous year. “I ­don’t know why I got this disease!” she chuckled, shaking her head at the irony of her diagnosis, considering she had predicted it so long ago. Her premonition about getting diabetes meant that she was prob­ably diagnosed at a very early stage of the illness. Diabetes had not interfered with Indu’s life; she was quite active. “I do all the ­house­hold work. I get up at six and make chai, then I go out to get milk and vegetables. I come home and cook them, have [more] chai, and wash the dishes. Then I do the sweeping and mopping, bathe, make breakfast, serve it to my ­family, and eat it myself. In the after­noon I make one vegetable dish that’s enough for [lunch and] dinner too,” she explained. In the midst of all this, she also looked ­after her father-­in-­law. This routine included a lot of h­ ouse­hold work but also afforded her regular leisure time. “I just have a l­ ittle weakness ­because of diabetes. I never used to get tired out before. Now I have some pain in my feet, too. Still, I just do work the same way I used to.” Like Kalpana, Indu made a point to do laundry by hand. “In a week I only use the washing machine once, just to wash the sheets and towels. I wash the rest by hand ­every day.” Although her f­ amily was smaller than most b­ ecause of her single son, Indu had many friends in her neighborhood with diabetes. Together, they attended diabetes events, such as the health camp, and met in the local park almost e­ very eve­ ning for a walk. Most of them had gotten to know each other first as neighbors and second as diabetic peers b­ ecause they had all lived in the same neighborhood for many years. They discussed tips and tricks for diabetes management, especially diabetic foods. Indu had learned from her friends with diabetes, for example, that roti [dry-­roasted flatbreads] made out of chickpea flour are a more diabetes-­ friendly substitute for the usual wheat-­based roti. ­These social relationships ­were impor­tant not only ­because they served as a source of practical advice, but also ­because they fostered w ­ omen’s motivation to attend clinics, perhaps filling the

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niche that a more supportive ­family might other­wise have done for Indu. Other medical anthropologists have found that for ­women who have diabetes, social support is key for illness management and more general coping (Kokanovic and Manderson 2006). Kalpana and Indu ­were among the few ­women in my study who had blood sugar control meeting the international recommendations for diabetes management that I have been critiquing throughout this chapter. ­Women like them would not have had to worry about being judged negatively by their physicians or their families. For both Kalpana and Indu, “good” blood sugar control transferred directly into “good” diabetes experience. By “good,” I mean that ­these ­women experienced ­little disability and fewer intrusive life disruptions than many ­others in my study—­a distinctly biomedical mea­sure­ment of work and morality. Neither ­woman needed the sick role’s exemption from normal duties (Parsons 1951). They each had blood sugar control at optimal levels, but their paths to this outcome differed, much like Manjot’s and Sita’s did earlier in this chapter. More than almost anyone I met during that year in India, Indu fit the model of the responsibilized biomedical subject I outlined earlier in this chapter—­ someone whose be­hav­ior is highly rational, or­ga­nized, and controlled around their diabetes health. Indu lacked many characteristics that doctors would associate with good diabetes management, such as being highly educated or wealthy. But she made up for this in her proactivity about her diabetes. Indu was a self-­starter. She was entrepreneurial in her acquisition and digestion of health information, self-­controlled in her diet, medi­cation, and exercise. Indu performed all the kinds of work that Corbin and Strauss (1985) outlined in their classic paper on managing chronic diseases at home: illness work, biographical work, and everyday-­life work. She took care of her diabetes with no help from her ­family, including getting regular checkups, even keeping up with this preventative care when she was feeling well. This was her illness work. Indu seemed to have no trou­ble integrating her illness into her daily activities and into her ideas about how her life should go. Nor had it changed her ideas about who she was as a person, perhaps in part b­ ecause diabetes was already part of her f­ amily identity (her ­father had had it). This was her biographical work. On top of all of this, like Sita, Indu maintained a h­ ouse­hold with no outside help, including taking care of her ill father-­in-­law and ­doing all the ­house­hold ­labor. This was her everyday-­ life work. Indu managed to fulfill the entrepreneurial and self-­caring roles that marked her as a “modern” Indian w ­ oman, and also the “traditional” domestic role of being the sole caretaker for her husband, son, and father-­in-­law. She was in many ways a diabetologist’s dream patient, and at the same time a domestically modern Indian ­woman and a good neoliberal citizen-­subject. Like Indu, Kalpana was able to attain nearly ideal biomedical diabetes control. Kalpana’s situation was not ­really a result of her own diabetes work. Although the

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outcome in Kalpana’s case was the same as Indu’s, Kalpana was much less directly engaged in the self-­care work that diabetes management typically demands. Instead, she benefited from social structures common in much of India that provide home-­based care to the el­derly, and from her socially power­ful position as a wealthy retired ­woman. A comparison of Kalpana and Indu, Sita and Manjot suggests that an individual’s hard work or lack thereof does not map neatly onto positive or negative diabetes outcomes. This is true despite the fact that biomedical models of diabetes care place responsibility for diabetes control squarely on patients’ shoulders. Manjot put a lot of work into diabetes self-­care, but d­ oing so did not guard her against poor health outcomes similar to Sita’s (who did much less diabetes work). In a parallel fashion, Kalpana did very l­ittle diabetes work, but she was still able to attain good diabetes outcomes similar to Indu’s (who did a lot of diabetes work). Western liberal notions of hard work leading to reward, which are the bedrock of biomedical models of diabetes self-­care, fail to account for situations when hard work does not actually produce the results we might expect.

Conclusions: Between Structure and Agency “Why would a perfectly intelligent, aware, educated person not follow ­things when he knows that not following them is gonna harm him?” asked Dr. Gupta, one of the best-­known diabetes physicians in Delhi, who counted national politicians and prominent businesspeople among his patients. Before I could open my mouth to reply, he went on to answer his own question: “It’s not out of real [hedonistic] plea­sure. I think it is about the feeling of restriction that the disease brings. It’s a feeling that I’m being told what to do, and I have to control it. That’s very irritating for p­ eople.” Sometimes the choices ­women make that compromise their health might indeed be motivated by desires to indulge in prohibited foods or other health-­harming be­hav­iors, as Dr.  Gupta was suggesting. For many, however, a lack of compliance comes about ­because nonnegotiable responsibilities interfere with diabetes management, and vice versa: diabetes management interferes with ­people’s other life priorities (Kokanovic and Manderson 2006; Manderson and Kokanovic 2009; Naemiratch and Manderson 2008; Mendenhall 2012). Physical health is not necessarily the priority of this balance, although most physicians with whom I worked uncritically assumed that their patients ­ought to be focused on the strictest pos­si­ble blood sugar control. Younger and more Westernized than most of the physicians with whom I worked (he had been educated abroad), Dr. Gupta treated the elite of Delhi, so his account of p­ eople’s motivations to “cheat” on their diabetes management was highly specific to the wealthy classes. So was his approach to treatment. Dr. Gupta’s newest innovation at that time was a text-­message system that reminded his patients when they needed to check their blood sugar and attend follow-up

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appointments. Patients ­were able to respond to the messages with their blood sugar values, which got uploaded directly into a database that Dr. Gupta could access at any time to chart his patients’ blood sugar levels between appointments. This way, he was able to pay more attention to his patients’ everyday self-­ management than any of the other physicians with whom I worked. But this innovation depended on p­ eople having glucometers at home to check their blood sugar, and cell phones with active credit that would allow them to send and receive text messages. It also depended on p­ eople actually reading and responding to his messages. Why, Dr. Gupta asked, do perfectly reasonable p­ eople knowingly do t­ hings that harm their health? His answer to this question drew on the biomedical model of diabetes, in which ­people’s health-­maintenance choices are often interpreted through the moral discourse of choosing to “cheat” (or not) on guidelines (Broom and Whittaker 2003). Ironically, as Dr. Gupta pointed out, p­ eople may sometimes choose to exercise autonomy and self-­control over their lives by not controlling their diabetes (Naemiratch and Manderson 2006). His solution to this was a technology-­dependent reminder system that increased his vigilance over his patients’ biologies and aimed to increase theirs as well. I bring this up h­ ere ­because it is yet another instance where moralized diabetes self-­management, class, and in­equality intersect. I was familiar with the moral discourse of “cheating” in diabetes care before I started fieldwork in India ­because other anthropologists have written about it extensively (Broom and Whittaker 2003; Ferzacca 2000; Naemiratch and Manderson 2006; Seligman et al. 2015). But ­after meeting ­women like Sita, I wondered if the ability to exercise autonomy through “cheating” on one’s diabetes control was a luxury reserved for the elite in the North Indian context. I could not imagine a ­woman like Sita describing her constant chai drinking as “cheating,” for example. She had no alternative, given the remarkable burden of domestic work she had to fulfill ­every day, and the very real consequences she feared should she miss even a few days of work. Manjot might have been “cheating”—­her ­daughter certainly seemed to think this was the case—­but she resented this accusation and denied it vehemently. The analytic device of Corbin and Strauss’s (1985) three kinds of chronic-­ disease work is helpful for drawing together the disparate lived experiences of diabetes I introduced in this chapter b­ ecause it highlights what each w ­ oman did to accommodate her diagnosis within her larger life priorities. Without this, it might be easy to conclude that someone like Sita was not ­doing anything substantial to respond to her diabetes—­a conclusion that is problematic b­ ecause it implies that she ­ought to carry responsibility for her diabetes health that she simply could not access in her disadvantaged social position. Likewise, without an analy­sis of chronic-­disease work, we might overlook just how crucial Kalpana’s ­family was to her successful diabetes management. We might assume that

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Manjot was not r­ eally trying b­ ecause her blood sugar was so poorly controlled, or that Indu was just “lucky” ­because hers was so well controlled. By pushing the bound­aries of what counts as “work,” Corbin and Strauss force us to confront the assumption that positive action always leads to positive outcomes. This is crucial for an illness like type 2 diabetes, where some of biomedicine’s moral biases are most obvious, and where even very diligent management cannot guarantee good health b­ ecause the expectation for self-­care is embedded in a world that does not offer equal chances to ­every person. The ­women in this chapter illustrate the impor­tant point that the amount of work one puts into diabetes control is not necessarily related to the degree of diabetes control one attains. In other words, “good” or “bad” control is not always predictive of “good” or “bad” illness experiences, and this turns commonplace cap­i­tal­ ist ideas about work and reward on their heads. Part of the disjuncture between individual experiences and institutionalized expectations around diabetes is biomedicine’s moral commitment to the modern liberal subject. This individual should be able to exercise responsibility for diabetes self-­care through her own self-­governance around food, medicine, and other bodily practices (Galvin 2002; Lester 2009; Rose 2007). Collectively, anthropological ideas about sick roles, neoliberal subjectivity, and illness work help us develop more nuanced models for understanding how ­people experience chronic illnesses over time, and how ­these illnesses may come to invade, intertwine with, and sometimes overcome other aspects of personal life—or not. The tension between moral judgment of the responsibilized neoliberal citizen (Ferguson 2009), on the one hand, and acknowl­edgment that misfortune is partially a result of structural forces, on the other, speaks to the longstanding debate in anthropology over the roles of structure versus agency in determining ­human be­hav­ior. Throughout this chapter, I have drawn attention to the social embeddedness of each ­woman’s diabetes experience to show that although ­people make individual choices that affect their health, the range of choices available to them, and the route they are likely to choose, is inevitably influenced by larger structural ­factors. For instance, Manjot and Sita suffered from poorly managed diabetes at least partially b­ ecause of f­actors out of their control such as depression, poverty, and heavy domestic responsibilities. A similarly critical look at Kalpana’s and Indu’s good diabetes control suggests that their positive outcomes ­were as much products of their life circumstances—­including strong ­family support, money, and autonomy granted by their ­family situations—as they ­were products of their individual efforts. ­There are several valuable lessons to be learned h­ ere about how p­ eople juggle priorities when making health decisions. Assigning blame to individuals for poor diabetes control is neither useful for encouraging compliance, nor necessarily an accurate reflection of the reasons why some individuals are able to maintain diabetes control while o­ thers are not. Instead, this blaming discourse tends to

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produce frustration and social estrangement, as was the case for Manjot. This difference is noteworthy ­because, again, it highlights how illness experiences are ­shaped in part by personal choice, and in part by external forces that may differ across class, community, culture, and other contextual ­factors. Before moving on, I want to offer a note of caution about the potential pitfalls associated with focusing too much on the structure-­versus-­agency debate in the lives of the ­women in this book. Feminist analyses of ­women in positions of oppression have converged around a pattern of seeking to demonstrate agency within structure to such a ­great extent that we have, I believe, begun to fetishize the idea of ­women’s quiet re­sis­tance (Abu-­Lughod 2013). Although it might be analytically satisfying to “prove” that ­women act with agency even in situations where they are constrained by social structures, we must also keep in mind that ­these negotiations are about pragmatics and logistics, especially family-­related ones. When you are a ­woman in North India, sometimes ­those pragmatics and logistics do not support autonomous action that is held up in Western philosophical traditions as an index of “freedom” or “agency.” We might read Sita’s focus on her ­children’s ­future rather than her own health as a form of agency, for example, but we also should not overlook the multiple axes of social oppression she f­ aces as a low-­caste, uneducated, orphaned female domestic worker. The ­women in this chapter defy the structure-­versus-­agency dichotomy. Instead, holding the two perspectives in tension is productive for bringing a nuanced critique to biomedical approaches in India, and all over the world. As anthropologist Jocelyn Chua notes of her interlocutors in South India, who pursue elusive aspirations of success and self-­fulfillment through rural-­to-­urban migration, “We must not subsume t­ hese experiences u­ nder universalizing models of neoliberal subject formation,” but rather recognize that w ­ omen’s “modern” efforts to participate in some aspects of neoliberal subjecthood are “­shaped in distinct ways by regional imaginaries” (2014, 150). ­Simple judgments about what constitutes “good” and “bad” diabetes control belie ­whole worlds of moral and practical negotiations that ­women with diabetes in North India, and in many parts of the world, engage in ­every day.

4 • TENSION Diabetes, Distress, and ­Mental Health

An air of gloom hung around Shila, a middle-­aged Hindu ­woman. Shila lived in Calcutta, but she was in Delhi visiting one of her two married ­daughters. The two generations of ­women might have been happy, a middle-­class ­family reuniting on holiday, but Shila was dissatisfied. The reason came to light early in our discussion, when I asked her about why she thought she had gotten diabetes. “Oh, I d­ on’t know anything,” she said rather self-­dismissively. Both Shila and her ­daughter spoke a Hindi peppered with En­glish words, known popularly as “Hinglish,” which is common in Delhi and other major cities. Before I could open my mouth to encourage her to share her thoughts, Shila went on, “Well— my other ­daughter’s mother-­in-­law is bad.” “Yes,” interjected her d­ aughter. “Veh hammein bahut tension detein hein [They give us a lot of tension]. They ­don’t let us meet her.” Shila had been hoping to see her younger d­ aughter on this trip, but to no avail. “My younger ­daughter’s mother-­in-­law, she ­doesn’t let us come or let her go. This has totally impacted my mind. She ­didn’t allow her to meet me for two or three years!” Shila exclaimed. “Usi din se usko sugar pakar liye,” explained her older ­daughter: from that very day she got sugar (literally, “sugar got hold of her”). “She kept on crying.” “Mmm hmm,” Shila agreed, “Chinta karte-­karte, sugar ho gya [with all this worrying, sugar happened to me].”1 At this point, I could not have stopped them from talking if I had tried. Her ­daughter went on, “Mommy kept brooding about why they w ­ ouldn’t let her come; why ­can’t she meet with her ­daughter? If we went to meet her, even then [the mother-­in-­law] ­wouldn’t allow her to talk to us, only let us see her. She’s ­really bad.” “Just ­after this, my health went bad.” “Yes,” her ­daughter jumped in, “just ­after [my ­sister’s] marriage, sugar got hold of my mom. . . . ​Now [my s­ ister] comes to visit a­ fter a year or two, but she leaves quickly. I mean, her in-­laws ­aren’t alright; her husband i­ sn’t alright, ­either. He ­doesn’t help her arrange to see us.” When I asked what could possibly be moti66

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vating her ­daughter’s new ­family to be so controlling, Shila shook her head, saying resignedly, “I ­don’t know. Every­one has their own dif­fer­ent mentality.” E. E. Evans-­Pritchard, one of cultural anthropology’s founding ­fathers, wrote, “The most difficult task in social anthropological fieldwork is to determine the meaning of a few key words, upon an understanding of which the success of the ­whole investigation depends” (2004 [1951], 80). Having worked in India for extended periods, I suspect that tension is one such word, without which it would be difficult—­perhaps even impossible—to understand how p­ eople experience both incidental distress and the more profound and less accessible experiences of prolonged sadness and suffering. I believe this is especially true for w ­ omen, who in North Indian society have few culturally endorsed routes for airing grievances (Nichter 1981). It might be hard to understand how Americans approach the world without a clear idea of the common term stress, and in par­tic­u­lar the way middle-­ class American ­women self-­consciously construct their identities around the idea of being stressed by competing life responsibilities. So, too, one might miss part of the picture of ­women’s lives in India without a clear understanding of tension. This chapter is about “tension” and how it relates to ­women’s ideas about their own health and well-­being. The biomedical lit­er­a­ture thoroughly documents a relationship between diabetes and distress, but most of the studies have been conducted among populations living in high-­income countries (Anderson et al. 2001; Egede and Ellis 2010; Golden et al. 2008; Mezuk et al. 2008; Renn, Feliciano, and Segal 2011). Depression impacts diabetes health for several reasons: ­because it is much harder to adhere to diabetes treatment programs when one is depressed (Ciechanowski, Katon, and Russo 2000; Lerman et al. 2009); ­because depression results in higher healthcare expenses (Egede, Zheng, and Simpson 2002); and b­ ecause depression compromises broader quality of life (Goldney et al. 2004). Some research even shows that depression increases the risk of death among ­people with diabetes twofold (Katon et al. 2005). I deci­ded to focus one portion my work around questions of diabetes, “tension,” and m ­ ental health among ­women in North India, something that has been examined very ­little in this part of the world, especially from a social-­science perspective. Tension figured prominently in Shila’s narrative of ­family discord, distress, and diabetes (as Shila’s d­ aughter said above, “They give us a lot of tension”). This vignette illustrates the connection between tension and diabetes, but the term extends far beyond discussions of diabetes. In fact, tension was one of the most common expressions I encountered in my fieldwork among w ­ omen, with or without diabetes. A ­simple “How are you?” might elicit a comment such as, “I’ve got tension about my d­ aughter’s studies.” Walking in the park, I might overhear w ­ omen gossiping: “Her son is r­ eally causing her a lot of tension. He’s refusing all the girls they are finding for him [to potentially marry].” Or perhaps a m ­ other admonishing her d­ aughter: “­Don’t take so much tension. It’s bad for your health.” The word first caught my attention b­ ecause ­women used it to explain what caused

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their diabetes, but the concept resonates in con­temporary India outside its associations with specific illnesses. The insertion of En­glish words like tension into conversational Hindi is common in North India, especially in urban areas like Delhi. Bollywood films feature actors speaking in Hinglish, and almost every­one knows and uses some En­glish words even if they have never formally studied the language. ­There are a few ­things about tension, however, that make it dif­fer­ent from other En­glish words used in Hindi: first, En­glish words most often show up when ­there is no Hindi equivalent, or are attached to par­tic­u­lar items that appeared in India during the British colonial period: mug, buggy, tobacco (altered slightly to become tambaku), tank. Tension is not like this; ­there is a Hindi term, tanav, which translates as “tension,” but it is very rarely used. ­Women in my study never said in Hindi, “Mujhe bahut tanav hein”—­literally, “A lot of tension is happening to me,” but meaning roughly, “I have a lot of tension.” They would invariably say, instead, “Mujhe bahut tension hein.” A second ­thing that makes the term tension unique is the fact that it seems to index a par­tic­u­lar kind of stress in its Indian context. Tension, like stress, is a word borrowed from physics, and it refers to the pulling forces that a rope or other solid object exerts on another object, which tend to stretch or elongate it (as in a rope being pulled in opposite directions). Speakers are prob­ably unaware of this latent meta­phor when they use the term. Nevertheless, it is relevant for thinking about the social stressors ­women indexed when they used the word tension. This form of distress is subtly distinct from ste­reo­typical Anglo-­American conceptions of “stress,” which often involve a sense of being “weighed down” or, as the expression goes, “having the weight of the world on your shoulders.” For the w ­ omen with whom I worked, “tension” was inherently social, defined by the pull between competing roles and expectations. Psychological and medical anthropologists have named this kind of expression an “idiom of distress.” An idiom of distress is simply a culturally par­tic­u­lar way of expressing distress through words or actions. The original study that coined the concept in the early 1980s was conducted among w ­ omen in North India (Nichter 1981). In it, anthropologist Mark Nichter reported that a group of Brahmin ­women in rural India used nonverbal be­hav­iors, such as serving visitors tepid tea, as a subtle but direct way of expressing dissatisfaction with their husbands and families. Nichter surmised that w ­ omen communicated in this way b­ ecause it was socially unacceptable for them to complain directly about their husbands. The word tension is likewise useful, in part, b­ ecause of its imprecision; one of its greatest advantages seems to be its ability to maintain ambiguity around stressors that might threaten a person’s social acceptability. This is extremely impor­tant ­because in North India, w ­ omen’s vis­i­ble self-­sacrifice on behalf of ­others is a key criterion on which their morality is publicly judged (Cohen 2000; Snell-­Rood 2015a, b). With words like tension, w ­ omen can express distress without appearing to be inappropriately self-­centered.

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A handful of scholars have documented “tension” in India, but few have studied it with focused attention. Instead, it often crops up in passing during discussions of other maladies. The term is found among Hindi speakers and other South Asian linguistic groups, including Malayalam speakers in Kerala, Marathi speakers in Mumbai, Bengali speakers in Bangladesh, and Konkani speakers in Goa (Halliburton 2005; Pereira et  al. 2007; Ramasubban and Singh 2001; Rashid 2007; Rodrigues et  al. 2003; Snell-­Rood 2015a; Solomon 2016). Halliburton (2005) views tension as it is used in the southern coastal state of Kerala as a “popu­ lar psychological term” (113), or a modern way to talk about psychiatric prob­ lems. In Halliburton’s view, when Western-­derived terms like tension supplant the expression of distress through the more “traditional” medium of spirit possession, a sort of cultural homogenization occurs. I disagree: I view tension as a relatively new mode of self-­expression that, like many aspects of urban Indian life, is both foreign and local at the same time (Liechty 2003). Tension is obviously foreign in that it is an En­glish word, yet it is also local b­ ecause it is used in Indian En­glish for a specific and unique purpose. Still, ­because the word is Western in origin, I did start from the same idea as Halliburton: that the concept of “tension” might be related to Western psychiatric conceptions of distress. I wondered, like Halliburton (2005): could tension be a culturally specific way of talking about depression? Tension became a key concept around which much of my work revolved, especially my understanding of ­women’s ­mental health and social self-­positioning through complaint. In this chapter, I first focus on tension as a way of talking about general life stresses, and then I narrow in on how w ­ omen describe the relationship between tension and diabetes.

Tension as a Modern Phenomenon When I was studying Hindi in the early 2000s, I lived with a single older w ­ oman I ­will call Shanti. A ­ fter I shared her space for many weeks, it became obvious that she was deeply distressed. Shanti was a cosmopolitan, educated w ­ oman who held a PhD in En­glish lit­er­a­ture and was one of the few divorcées I had met in India. She described herself as a strong and in­de­pen­dent ­woman, but she also felt lonely. She pined for her only son, who had emigrated to the United States many years before. She had regular bouts of violent temper, crying, silence, and happiness, and she often vacillated rapidly and unpredictably between ­these states. She never talked about her sources of distress directly, but she mentioned “tension” all the time, and cohabitating with her sensitized me to the prob­lem of distress among older ­women in India. Shanti’s life also illustrated in a very concrete sense how distress and internationalization could be linked. Her son’s emigration seemed to be the repository of all her negative feelings about her own life; his tidy room, kept just the way he had left it, was a constant reminder of his absence, and no

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amount of concerted in­de­pen­dence on her part seemed to chase away her palpable longing for him. ­There is a widely held perception in India that tension is increasing in modern times, and especially in urban spaces. The older husband of a research participant, whom I mentioned briefly in chapter 2, and who felt that ­women in villages ­were “oppressed but happy,” had strong opinions about tension, too. He thought that tension was a prob­lem in Delhi b­ ecause of gender role changes. “God could have created the sexes the same, but he made two of them. He made them differently,” he began. “You tell me, why is ­there so much depression in Amer­i­ca? Rural ­women in India are oppressed, but still they ­don’t get depression, even though they are treated very badly. Maybe w ­ omen ­there [in the United States] are too in­de­pen­ dent. With in­de­pen­dence the ele­ment of aggression comes out; the competition between the sexes creates tension. It creates clashes. You tell me if I am saying anything wrong.” Marshaling all of my patience, I kept my mouth shut, nodded, and let him continue. “In Delhi and Bombay it is also happening. It used to be that we would open doors for ladies and speak politely to them. I thought it was very nice. Nowadays who opens the door for them? If you open a door for a lady she w ­ ill get offended: ‘You think I ­can’t open the door for myself?’ But in rural areas, he does his work and she does her work. ­There is no clash, so the stress is less.” Although I felt it was prob­ably untrue that ­women in rural India categorically stay happy despite being oppressed, this man’s statement encapsulates the widely held belief that ­mental health prob­lems are becoming more common in urban India as a result of globalizing cultural values. He specifically connected an increase in tension to changing gender dynamics in con­temporary Indian society, but ­others believed that tension was increasing ­because of busy lifestyles, the breakdown of traditional ­family structures, and competition for schools and jobs. One day, on a particularly bumpy auto-­rickshaw ­ride, I was chatting with the driver about my research. When I mentioned tension, he said, by way of explanation, “­Here [in Delhi] are p­ eople from all states. In villages p­ eople are of the same kind. They know each other. So when ­there is a fight, it’s resolved with love [prem se]. ­Here that ­doesn’t happen. Nobody knows each other.” Another one of my friends, a highly educated artist, connected the rise in tension with consumerism. “I think [it is ­because of ] all this unnecessary consumerism that has been ­introduced along with capitalism,” she said. “We want, and we think we have to buy. ­People are reaching. ­There ­were fewer opportunities in our parents’ generation and less population also, so they ­didn’t think too much. Now it’s all t­ here to see on Facebook and Instagram; now I can see what is your life like in U.S.—­the food you eat, the clothes you wear. Before I had no idea. ­People are aspiring, and ­there are no social ser­vices [to help them].” Dr. Nair, a young psychologist working in both a clinical and an academic setting in Delhi, agreed that m ­ ental health prob­lems seemed to be increasing as a result of shifts away from the familiar domestic roles that most of her ­woman patients grew up with. “Our society is in a

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huge transitional state. ­We’re leaving ­behind a lot of t­ hings that are supposed to be our cultural values, and ­we’re not very sure if we want to accept the new values that are coming from dif­fer­ent parts of the world. . . . ​But while we want to hold on to what­ever we believe is our heritage, is our culture, ­there is a very strong need—­ and I’m not just talking about a sixteen-­year-­old, but I’m also talking about the forty-­year-­olds and forty-­five-­year-­olds—to look at the other exciting ideas that are coming from dif­fer­ent parts of the world. So ­there is a huge state of flux, and I think that is necessarily leading to a lot of [­mental health] prob­lems.” The research participant’s husband, the auto-­rickshaw driver, the artist, and Dr. Nair all characterized tension as a direct product of changing values and social roles in urban areas. By their reckoning, agents such as social media, consumerist aspiration, and the disintegration of small communities w ­ ere responsible. Their comments reflect an overarching sense of “mismatch” between p­ eople’s expectations about how life should go and their pres­ent circumstances in the megacity of Delhi. But all of ­these conversations occurred on a very general level. When talking about their own tension, ­women rarely referenced the abstract realm of changing social values. Yet they still connected tension to three major themes, all of which have impor­tant implications in urban India for social class and social mobility: their ­children’s educational achievements, marriage, and money, which I describe in turn below. In my study, w ­ omen with young c­ hildren ­were intensely preoccupied with ­whether their ­children would obtain high enough marks on exams, which would (in theory) ensure their admission into colleges or into elite streams of study. This would, in turn, guarantee them a stable ­career. After-­school private study sessions with tutors ­were de rigueur for anyone who could afford them. And this was a dual worry: m ­ others ­were highly invested in their c­ hildren’s success, but they ­were also concerned about the negative effects that the pressure to achieve might have on their ­children’s well-­being, regardless of ­whether or not they actually achieved at a high level. Besides concerns over educational attainment and its consequences for social mobility, a common cause of tension was financial worry (also noted in Snell-­ Rood 2015a, 55), which often was connected to the high costs of ­daughters’ weddings. In India, the bride’s ­family typically pays for the marriage cele­bration and provides a dowry. Although dowry—­property or money given by the bride’s to the groom’s ­family on marriage—­was outlawed in India in 1961, it is still common. Grooms’ families often make it known, implicitly or explic­itly, that they expect a certain amount of money or gifts such as vehicles or ­house­hold appliances as dowry. This is often justified as a sort of predeath inheritance for the bride, but the groom’s ­family typically controls dowry once it has been paid out from the bride’s f­ amily. B ­ ecause questions of ­family honor and ­daughters’ financial stability are at stake in dowry exchange, families with whom I worked took dowry very seriously, even if they ­were ideologically opposed to the institution. It was not

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uncommon for a ­family to spend multiple years’ worth of the primary earner’s salary to provide a lavish ceremony and a generous dowry for their ­daughters, often borrowing from relatives to make this happen and sometimes g­ oing into significant debt. Marriage, like education, was a source of anxiety for many families not only ­because of the huge expenses associated with it, but also b­ ecause it is a pivotal point in the life course when the entire ­family’s social status can change ­either for better or for worse. In the same way that good marks on exams portend a good job and a ­future of economic stability, a good match in marriage ensures—to the best of parents’ ability—­a secure ­future for the ­daughter who ­will officially leave their care once she is married. ­People view marrying into a good ­family as a way to provide financial stability, cohesion and support between ­family members, enhanced social reputation, and a good environment for ­future grandchildren. Good marriages also serve as an occasion for brides’ families to publicly establish (or re-­establish) the ­family’s identity as eco­nom­ically stable, socially connected, and generous.

Tension, Diabetes, and ­Family Life Manpreet, a fifty-­year-­old ­woman who had been diagnosed with diabetes the year before we met in one of the charitable clinics, understood her diabetes as a product of tension. Like many ­women, she experienced tension about marriage and finances. She and her retired husband lived with their adult son and his wife, on whom they depended financially. On the day of my visit to her ­house, however, none of the men w ­ ere at home. Instead, I sat with Manpreet on her doily-­clad sofa with three generations of her natal ­family—­her el­derly ­mother, her ­daughter, and her young grand­son, who ­were all visiting from their nearby ­house­holds. This opportunity to sit around and chat was rare for Manpreet, who usually remained busy with h­ ouse­hold work. I was ostensibly ­there to interview her about diabetes, but we spent much more time discussing f­ amily dynamics. The topic of tension came up quite a lot. Manpreet was dealing with a lot of ­family conflict arising from her daughter-­ in-­law’s work outside the home, and financial worries fueled by what she perceived as her daughter-­in-­law’s extravagance. This was a particularly sensitive subject ­because Manpreet, the only nonearning adult member of her f­ amily, had no direct access to money ­unless she asked her husband or son for it. She even blamed her diabetes on stress about money. For instance, she was confident that financial tension about the cost of an emergency hysterectomy around the time of her ­daughter’s marriage had precipitated her diabetes: ­ ose days I had a lot of tension. I was arranging to get my ­daughter married, and Th I had a lot of tension ­because two and a half months ­after my operation, her wed-

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ding was scheduled. I wanted to have the operation a­ fter the wedding, but I had to get it done sooner ­because it could burst from inside my uterus if I waited. ­After the operation I was tired out; I was worried about my ­daughter’s wedding. The money that was supposed to be for her wedding had to be spent on my operation, and we w ­ eren’t in that good of a financial condition at the time. I was so tensed about it that for two and a half months I ­didn’t sleep. I was that tense. And I had tension even more ­because two months ­after the wedding, my ­daughter’s husband got ill. My tension got even worse. I c­ ouldn’t talk to anyone; I ­couldn’t tell anyone ­these tensions. So this is why it [diabetes] happened to me: b­ ecause my tension kept increasing. I ­don’t take a [excessive] diet; it’s not like I eat all day.

­Here, “tension” was intimately entwined with disease—it surrounded Man­ preet’s hysterectomy and her son-­in-­law’s illness, but it also precipitated the onset of a new illness, Manpreet’s diabetes. Manpreet had tension about her health, but she had even more about the division of domestic ­labor in the ­house­hold. Both Manpreet’s son and his wife worked full time, leaving Manpreet to manage the ­house­hold on their behalf. It quickly became apparent that she harbored significant resentment about having to do all of the domestic work in place of her daughter-­in-­law, who would have been responsible for most of ­these duties if she had not been working outside the home. ­Here was a clear example of the arrangement I referenced in chapter 2, in which changing work roles for younger generations of w ­ omen have trickle-­down effects that impact older generations, even if ­those older generations are not themselves working outside the home. Manpreet began her discussion of the f­amily dynamics evenhandedly. “We [my husband and I] cooperate with them [my son and daughter-­in-­law]. We ­don’t interfere with them or forbid them from d­ oing ­things. In this way we create a peaceful atmosphere in the ­house­hold. ­There ­shouldn’t be tension in the ­house, not for my son, not for my daughter-­in-­law, not for me. That’s my opinion.” But as the conversation progressed, Manpreet’s negative feelings seemed to escalate. Over a delicious lunch of oily, spicy karela (­bitter gourd) that Manpreet had stuffed with onions and tomatoes, and then meticulously wrapped with sewing thread so they could stew, she opened up. To begin with, she felt that her daughter-­in-­law, whom she rather mockingly referred to as “Madam,” did not sufficiently appreciate the socioeconomic bump she got when she married into their ­family. [My son] brought this girl from a middle-­class ­family where she had to earn her own money to support her needs. She worked, then came home and gave tuitions [tutored school ­children]. She was busy all the time. She did this much work so she could support her own costs; her parents ­couldn’t do it. She was in a bad situation. Since she left that ­house, she’s come up. She has so much money now. Since

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the day she came h­ ere to us, she’s just enjoyed life. Even good, rich ­people ­don’t enjoy as much as she has done. If she wants to, she can just skip eating the food that’s cooked at home and order herself a Bikaneri thali [a Rajasthan-­style meal] for 250 rupees. She can order cold drinks or pizza whenever she feels like it. . . . ​ She’s traveled so many places, even outside India. . . . ​Money changes p­ eople. ­She’ll get a [salwar] suit made, wear it for two months, and then decide she d­ oesn’t feel like wearing it anymore and give it to someone e­ lse. She ­doesn’t understand the value of money.

Manpreet resented her daughter-­in-­law’s lack of regard for money, and she felt that her daughter-­in-­law should contribute more to household-­management activities: ­ ey’ve been married for seven years, and she still ­doesn’t know how to cook for Th the f­ amily. I have to make vegetables for breakfast, make lunch, think of the laundry. I have only one son, and I thank God for this. I d­ on’t put any of this on my daughter-­in-­law, but she d­ oesn’t appreciate it. My d­ aughter has so much work to do in her in-­laws’ home. Her mother-­in-­law is always ­after her to do all kinds of work. ­Here, I do half of the h­ ouse­work, and the maid does the rest. What has she [daughter-­in-­law] done? . . . ​She should also know her responsibilities.

If it w ­ ere not for Manpreet’s domestic work, the daughter-­in-­law would not be ­free to work in a salaried job. Manpreet felt she was being asked to do what was ­really someone ­else’s job, and in the pro­cess was being “robbed” of her golden years. The alternative perspective—­that the daughter-­in-­law worked full time, and therefore should have access to the money she earned to spend in the manner she wished—­did not enter into the conversation. But I could also understand Manpreet’s feeling that in a joint ­family situation, where resources are usually pooled and distributed according to ­family members’ needs, the person ­running domestic affairs should have as much access to funds as t­ hose working outside the home. The ­family’s conflicts ­were ideological. But they ­were also logistical, and ­here again the two ­women butted heads about how t­ hings ­ought to be run. The conflict over money got so severe at one point that it nearly divided the ­house­hold. “My daughter-­in-­law puts ideas into my son’s head,” said Manpreet. “Last year she said she wanted to live separately from us. Even though ­we’ve done so much for her, she said, ‘Papa d­ oesn’t do this, Papa d­ oesn’t do that, Papa w ­ on’t spend money on this. Mommy ­orders too many rations ­every month.’ We always keep a store of sugar, rice, and wheat flour. This is a sign of a good h­ ouse­w ife.” Manpreet resented the daughter-­in-­law’s interference in the domestic realm; ­because she had relinquished the responsibility of ­running domestic affairs, Manpreet felt that she should not interfere at all. Manpreet, in turn, resented the daughter-­in-­law’s

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expenditures on t­ hings Manpreet viewed as frivolous, such as eating out and travel. This to me neatly encapsulated the two ­women’s differing ideological positions: one, focused on expenditures to maintain the domestic sphere; the other, focused on spending money on ­things that marked her as modern and middle-­class. “It’s not as if I think they should face all the prob­lems we faced, but they should also think of us a ­little bit,” Manjot explained. ­Later on, however, she accused her daughter-­in-­law of “ruining my life.” She admitted that she, too, had thought it might be better for their h­ ouse­hold to split. “But how can we go separately?” she asked. “Our son d­ oesn’t want to live apart; we have just one son, and he wants to stay with us. He says, ‘I want peace at home. If we have to spend more money, then spend it. But no one should be separate.’ Even ­after just a year of marriage I told them that they should live separately, and it ­wouldn’t cause me any tension.” The conflict affected not only the ­house­hold environment; it also affected Manpreet’s diabetes self-­care. A year into her treatment when we met, Manpreet had relatively good blood sugar control, although her glycated hemoglobin and C-­reactive protein levels ­were slightly elevated, suggesting long-­term health risks if ­things continued in the pres­ent pattern. Manpreet would have liked to go to a private clinic where she thought she could get good diabetes treatment, but instead she got her diabetes care from a charitable clinic that she attended only intermittently ­because her husband and son begrudged the money it cost for her to see the doctor. This left her feeling “tension” both about money and about her health, especially when she was constantly confronted with her daughter-­in-­law’s economic freedom. I just feel insecure sometimes. I mean, we should have enough at home to fulfill all our needs. Like, if I am ill and I need to go to the doctor, I have to stop and think about ­whether or not to spend that money on a consultation. If I need to go to the doctor, I think twice about it ­because you have to pay 500 [rupees] for the consultation. If I ask my son for 1,000 for the fees, he says, “Why do you need so much?” Th ­ ese days 1,000 i­ sn’t that much. So I have to come to t­ hese [charitable] clinics. Last time, I waited for hours, and the doctor showed up, talked with some relative of his, and then left without seeing me. I was ­really upset about it. If we had more money, I could go somewhere ­else for a consultation. But I have to come to ­these clinics and wait.

Mother-­in-­law/daughter-­in-­law relationships are an archetypical source of f­amily conflict in North India. They serve as fodder for tele­vi­sion serials, films, and lit­er­a­ture, and they usually focus on one of two tropes. The first is an overbearing and abusive mother-­in-­law, which was evident in the situation of Maya, the young ­widow whose story opened this book, and of Shila from the beginning of this chapter, whose ­daughter was controlled by her in-­laws. The second trope is

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the uppity daughter-­in-­law who does not re­spect the h­ ouse­hold she is marrying into, which was what Manpreet was drawing on in framing her ­family’s story. Yet, Manpreet and her daughter-­in-­law had much more in common than might initially appear. Each w ­ oman rather uncomfortably inhabited roles that departed significantly from t­ hose occupied by their forebears just a generation earlier. U ­ nder alternative circumstances, Manpreet would have been enjoying retirement from ­house­hold duties, and her daughter-­in-­law would have devoted herself to domestic work exclusively. Manpreet’s daughter-­in-­law would not have worked outside the home, and therefore would not have had the financial freedom she enjoyed. But she also might not have attracted such ire from her mother-­in-­law. ­These two ­women’s role reversals are in many ways emblematic of the “other exciting ideas that are coming from dif­fer­ent parts of the world” that Dr. Nair, the psychologist, claimed ­were responsible for the changing expectations of both younger and older generations earlier in this chapter. ­People like the man I quoted earlier, who thought rural ­women ­were “oppressed but happy,” had exactly this kind of situation in mind when they characterized “tension” as a modern phenomenon resulting from changing social roles, especially for w ­ omen. The tension in Manpreet’s ­house­hold was in part about her daughter-­in-­law participating in social roles that diverged from Manpreet’s expectations. It was also, however, very much about money, class, and social propriety. The majority of the ­women in my study had life circumstances that resembled Manpreet’s: they w ­ ere ­middle class, and they might be engaged in some level of diabetes self-­care, but ­were constrained by one or another ­factor—­time, awareness, money (as was the case for Manpreet), education, or ­others. Most ­women, also like Manpreet, ­were not financially in­de­pen­dent, and this ­shaped their diabetes self-­care in profound ways. Having to ask begrudging male relatives for money to pay for transport and treatment would be enough to discourage many from seeking treatment at all. This was certainly true for Manpreet, who only went to the clinic when she had to, and even then, sometimes did not receive the care she felt she needed ­because the money her son and husband gave her was only adequate for the unreliable charitable clinic. On first glance, ­because finances constrained her ability to get the quality of care she felt she needed, Manpreet’s experience might fit into the discussion from chapter 3 about how socioeconomic class shapes possibilities for diabetes self-­care. Her situation differed significantly from Sita’s, the impoverished domestic worker from that chapter, ­because Manpreet’s ­family was financially very comfortable. The prob­ lem for Manpreet was not a lack of money; it was a lack of direct access to money. Two par­tic­u­lar qualities of the tension in Manpreet’s life ­were common to other ­women’s narratives. First was its multivalent nature. “Tension” in Manpreet’s narrative referred to distress with vari­ous sources and varying levels of seriousness. Like Manpreet, many ­women used the language of tension to refer to minor

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hassles. As one ­woman succinctly stated, “Tension happens! I mean, what good does it do us to think about it all the time?” For this ­woman, tension seemed to signal nothing more than day-­to-­day stress over small incidents. This kind of tension is a ­simple fact of life, one we all must grapple with. Even Manpreet started out by dismissing tension as something insignificant that one should let go of to preserve a happy ­family atmosphere. In other cases, the word indicated a truly serious level of distress that dominated the way some ­people framed their larger life stories. ­Later on in her story, Manpreet seemed to be verging on this level of tension, but it was not as serious as what was being endured by another young, recently widowed poor w ­ oman, who said, “I do get sad. It’s not [that I am suicidal], but I do feel sometimes like, ‘What kind of a life is this?’ ­There’s so much strug­gle. I have two girls to educate and raise by myself. Every­thing is my responsibility. ­Because of this I feel tension. I’ve had this tension from the beginning b­ ecause my husband’s health was poor since our marriage.” Another respondent who was poor and anxious about paying for her ­daughters’ marriages associated her tension with morbid thoughts: “Sometimes I even feel like ­dying when I’m in tension. . . . ​I have a lot of tension, just tension.” The first w ­ oman’s rhetorical question—­“ What kind of life is this?”—­and the second w ­ oman’s statement that she “even feel[s] like d­ ying” hint at the profound despair ­behind their tension. Then again, references to suicide are more socially acceptable in India than in some other parts of the world, and they may not always signal intention (Chua 2014). The second common feature of tension that emerged from Manpreet’s narrative was its intensely social nature. Earlier I mentioned that w ­ omen most often connected tension with concerns about their ­children’s education, marriage, or money. Manpreet’s story included all of ­these, and each was directly related to social relationships or social obligations: first, getting her d­ aughter married, then ­later, ­family disagreements about finances, and her daughter-­in-­law’s lack of involvement in the ­house­hold work. Tension ­here is something that can be created in one’s mind by the actions of o­ thers—­“they should live separately, and it ­wouldn’t cause me any tension,” Manpreet said, although even the prospect of them living separately was evidently causing her im­mense tension. This tension was something to be minimized—as she said, “I d­ on’t take t­hese ­things too seriously”—­yet it was also something that had the potential to disrupt the peace in their ­house­hold, even splitting the ­family apart. What makes tension so compelling both analytically (for this book) and in everyday interactions (for ­those who use the expression) is its amorphous nature. The term has the ability to serve as a unifying language for the threads of social life, health, and domesticity that are intertwined in w ­ omen’s lived realities, but often excluded from biomedical conceptions of pathological distress and what predisposes or protects ­people from it.

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Diabetes and Tension: Ethnophysiology and Biomedical Models No one fully understands the complex relationships between stress and chronic diseases, but it is striking that ­people from a variety of medical and nonmedical backgrounds—­lay, biomedical, and nonbiomedical—­agree that ­there appears to be a relationship. In this section I want to touch on three models: the biomedical model, Indian ­women’s firsthand accounts of their diabetes causality, and the explanation of tension from a nonbiomedical doctor, Dr. Usman. Remarkably, although they come at it from dif­fer­ent ­angles, ­these models converge on the conclusion that ­there is a clear relationship between tension and diabetes. I’ll begin with the biomedical model. More than any other aspect of my research, my study of tension captured the interest of the doctors with whom I worked; they ­were intensely curious about the potential connections between tension and depression and anxiety. This surprised me at first b­ ecause I thought the diabetes physicians would be more interested in what w ­ omen had to say about diabetes, the main illness they treated. I soon came to understand, however, that the diabetes physicians ­were interested in tension ­because they ­were accustomed to seeing patients ­every day who complained of tension but who, they suspected, might actually be suffering from clinically relevant levels of distress that they wanted to be able to detect and treat. “When we see poor control and lack of discipline over months, we ask a leading question: is ­there something that is stopping you from d­ oing your control? By circumventing the issue, sometimes they come to the point and tell us [that they are depressed],” explained Dr. Saxena, the diabetologist from the last chapter who volunteered at the monthly diabetes camp where he was known for chastising his patients. Like Emily Mendenhall’s (2012) Mexican immigrant in­for­mants with diabetes in the United States, some physicians observed that ­women patients “speak through diabetes,” using the illness as a framework for expressing under­lying psychosocial distress that may or may not have anything to do with diabetes itself. Dr. Gupta, the high-­profile doctor from the last chapter, was particularly interested in my systematic study of tension. He commented, “A very high proportion has complaints that have nothing to do with their physical ailments, or ­they’ve somatized their [distress]. It’s ­really amazing how common that is. Th ­ ere is a degree of anxiety, or in India we say ‘tension’ and ‘stress,’ that is ­really, ­really high. I think dealing with chronic disease is a big stress for most ­people. It’s like using chronic disease as a peg to hang all of your prob­ lems on.” All of the diabetes physicians w ­ ere concerned about the levels of tension they observed among their female patients; some estimated that as many as 80 ­percent of them suffered from clinical depression or anxiety, although t­ hese ­were speculations ­because ­women often resisted talking about distress directly. “They may not vocalize it,” explained Dr. Saxena. “They ­will not say that this is the prob­lem,

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but you can sense it.” For some physicians, a consistent lack of compliance with diabetes care served as a “red flag” that a patient might be experiencing significant psychosocial distress. “The first ­thing that is affected is diet and exercise discipline, and that triggers poor control. Poor control further worsens the cognitive function a bit, and [triggers] some somatic symptoms. When the somatic symptoms are added with t­hose, the level of mood is further down,” explained Dr. Saxena. To my surprise, he claimed that he regularly saw patients who became so depressed that they committed suicide by overdosing on their diabetes medi­cations. When I remarked that this could not possibly be a common occurrence, he contradicted me. “Three, four times a year [I see this]. They have a tool with them. They inject 100 units [of insulin], take ten sleeping pills, and actually that is enough [to kill them], ­unless somebody intervenes. . . . ​If you sort them out, it’s very rewarding, but we need the help of antidepressants pretty often. The addition of antidepressants has become much more common in the last few years.” Biomedicine explains the chronic disease–­stress link through endocrinology. Normally, stress hormones like cortisol and adrenaline spike during a stressful situation, preparing the body for a “fight-­or-­flight” response by shutting down digestion and sending a surge of glucose into the bloodstream to give muscles an extra boost of energy. The spike in stress hormones normally subsides once the stressful situation is over. When the stress is chronic, however, t­ hose hormones are constantly activated, and they can induce metabolic changes like chronically high blood sugar and insulin re­sis­tance that are implicated in diabetes. Scholars refer to this long-­term body stress as “weathering” or “allostatic load” (Geronimus et al. 2006; Juster, McEwen, and Lupien 2010; McEwen 1998; McEwen and Seeman 1999). Theoretically, weathering and allostatic load from chronic stress could actually cause diabetes if t­ hose stressors w ­ ere severe and prolonged enough. The lifelong social disadvantage of Sita, the domestic worker from chapter 3, was likely a major f­ actor in her early-­onset type 2 diabetes. The direction of the association between diabetes and depression is unclear, and in real­ity they are prob­ ably cyclically related, each condition creating a feedback cycle that augments the seriousness of the other (Pan et al. 2010; Renn, Feliciano, and Segal 2011). I want to move on now to w ­ omen’s own understandings of the tension-­diabetes relationship. Mirroring the medical lit­er­a­ture that documents a cyclical relationship between diabetes and depression (although they w ­ ere usually unaware of this parallel), ­people in my study conceived of tension as both a cause and an outcome of diabetes. This cycle appeared in Manpreet’s story: she believed she had gotten diabetes ­because of tension, but diabetes also caused more tension in her life. “I do have some tension ­because of diabetes—­like, life has become empty. I mean, I c­ an’t eat what I want. I have to watch my diet. If I ­don’t watch my diet, then my sugar goes up. It’s difficult,” she complained. Other ­women connected bad moods to fluctuating blood sugar. “I ­don’t know why, but when I have a low-­glucose

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feeling I have all ­these [mood] prob­lems. When my sugar goes low, every­thing goes low,” commented one w ­ oman. Dr. Sharma, the only ­woman diabetologist with whom I worked, echoed this. “Yes, yes, yes. ­People whose glycated hemoglobins are 6.5 or 7, I ­haven’t seen them feeling stressed. You know, I think it just gives them a good feeling, that I’m on top of it, I can do it. And t­ hey’re able to cope with every­thing ­else. But ­people whose A1cs are 8 and 8.5 and 8.9, they are the ones who feel r­ eally low,” she commented. Dr. Sharma was unsure how to parse the directionality of the diabetes and the distress, however. “­W hether it’s ­because ­they’re stressed out that t­ hey’re not able to cope with their diabetes, or ­because their sugars are high and ­they’re not able to cope with their emotions, I ­don’t know. It’s difficult to say.” The ambiguity ­here about the role of lived stress in diabetes causation illustrates the limits of biomedical ways of knowing, and this is one reason why incorporating the experience-­based knowledge of ­people with diabetes, as I attempt to do throughout the book, is so valuable. Indians are not the only ones who view stress as being linked to chronic diseases like hypertension, diabetes, and heart disease. This perception is common in the United States as well. Work in the 1980s and early 1990s by medical anthropologists such as Dan Blumhagen (1980), Linda Garro (1988), and Suzanne Huertin-­Roberts (1993) documented ethnophysiologies of hypertension among vari­ous American groups that all shared the notion that life stress could lead to high blood pressure. Huertin-­Roberts’ African American in­for­mants, for example, understood hypertension as “high-­pertension” or “hyper-­tension,” a condition caused by an excess (high, hyper) of what they referred to as “nerves” (worry). They believed that this worry made the blood rise into the head as mercury would rise in a thermometer, creating too much “pressure,” which led to the increase in blood pressure. In this scenario, the body functioned meta­phor­ically as a pressurized system, and “pertension” or “tension” could be caused by e­ ither physical overexertion or an excess of worry. Like the African Americans who envisioned the body as a pressurized system thrown off by hypertension, Indian ­women often drew on their own ethnophysiological and ethnopsychological models when describing tension. Many depicted it as a tangible force that enters physical bodies, accumulates t­ here, like a residue, over the entire course of one’s life (not just in the pres­ent or recent past), and ­causes a physiological imbalance that leads to diabetes, hypertension, and other illnesses. Manpreet’s tension built up, first, when her d­ aughter was getting married, second, when she had to have an emergency hysterectomy, and third, when her son-­in-­law fell ill soon a­ fter the wedding. This vision of accumulating tension is reminiscent of a supposedly unique model of Indian personhood documented in the lit­er­a­ture that envisions bodies as both figuratively and literally permeable, constituted through interaction, and group oriented rather than individually oriented. This view has been termed “dividual” (as opposed to “individual”; Marriott and Inden 1977), “intersubstantial” (Lamb 2000), “context-­dependent”

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(Ramanujan 1989), “collectivist” (Nisbett 2003), and, more recently, as being concerned with “absorption” (Solomon 2016). The conception of personhood as permeable is deeply rooted in caste hierarchies and in the idea that ritual impurity can pass from one individual to another through food, touch, sex, and sometimes even eye contact, throwing off the body’s humoral balance and ritual purity (Dumont 1966; Lamb 2000; Marriott and Inden, 1977; Ramanujan 1989; Raheja 1988). Although the ­women in my study did not explic­itly use the meta­phor of permeable personhood in their speech, we know that cultural context shapes cognitive pro­cesses (D’Andrade and Strauss 1992), and this model seems to resonate with the way the w ­ omen understood and described “tension” as a force that accumulated in their bodies. As I mentioned ­toward the beginning of this chapter, the concept of tension initially caught my attention ­because ­women so often associated it with diabetes. In fact, it was the most common cause they mentioned for the disease. When I asked systematically what they thought had caused their diabetes, over one-­third (sixty-­seven ­women or 36 ­percent) of the w ­ omen with diabetes in­de­pen­dently reported that some form of distress was the major cause of their illness, and almost half of t­ hese (thirty-­two ­women or 48 ­percent) specifically used the term tension to talk about it (see figure 4.1). Mendenhall and colleagues (2012), working in this same cultural context, also found tension to be a crucial part of p­ eople’s models of diabetes causality. In addition to its function as an everyday term for stress, the language of tension was a common way of understanding ill health. The other two most commonly mentioned c­ auses—­heredity and simply not knowing what might have caused the illness—­reflect two ­things: first, how common it was for ­women with diabetes to also have a relative with the disease; and second, how 67 59 54 Depression Shock Stress/worry 21

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figure 4.1 W ­ omen’s self-­reported ­causes of diabetes. Note: Numbers above each column represent how many ­people mentioned it. “Distress,” the most common category, is further disaggregated into four subcategories labeled in the legend at left.

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hard it can be to pinpoint a cause, or ­causes, for a disease as multivalent as diabetes. It should come as no surprise that it was difficult for ­women to sift through the many potential c­ auses of the disease, but it is striking that so many of them connected it to tension or stress. Fi­nally, I want to touch on the third explanatory model of the tension-­diabetes relationship, which came from nonbiomedical prac­ti­tion­ers. The nonbiomedical healthcare providers sometimes referenced portions of the biomedical model but also, of course, incorporated expert knowledge from their respective medical traditions. Unani medicine is a mixture of Greek humoral and medieval Islamic medicine and, along with Ayurveda, is one of India’s most widely practiced medical traditions. The Unani physician Dr. Usman, a highly animated Muslim man with whom I spent an after­noon, told me that he believed tension was improperly treated by biomedical physicians. “­People say they have tension about not having a job, ‘Oh, I’m having this prob­lem.’ If you keep this tension and sit with it, ­will it end? What ­will the doctor do? ­He’ll give you a sleeping tablet and knock you out! It w ­ on’t get rid of your tension. Tension w ­ ill only go when you change your nature.” By “changing one’s nature,” Dr. Usman explained, he meant willfully choosing to think positively about life, avoiding rumination, and being disciplined in one’s everyday activities. He went on to describe in g­ reat detail a morning routine to flush urban pollution out of one’s body and avoid getting sick: one must toilet and bathe, including the genitals, first ­thing in the morning to wash off all the germs that ­settle on one’s body overnight, he explained. Then one must read namaz [do Muslim prayers] before eating, take a walk outside to “get good oxygen” and clear out the pollution from one’s body, then eat slowly with a clear mind, being sure to alternate bites of food with sips of w ­ ater. ­Doing this, and leaving some space in one’s stomach at the end of a meal, would prevent diabetes, tension, and all the other diseases Dr. Usman connected with the germs and pollution of the city. “If you do ­these ­things, you’ll never get sick!” he exclaimed triumphantly, a fin­ger in the air. Diabetes in India is an unusual case b­ ecause explanatory models coming from lay p­ eople, biomedical prac­ti­tion­ers, and nonbiomedical prac­ti­tion­ers all converge upon the shared conclusion that stress is (somehow) causally related to diabetes. The pathways that lay and biomedical explanatory models draw on to understand this comorbidity differ, however, and are not always clear. I found that ­women, their families, and their healthcare providers ­were unsure about the ordering of the diabetes-­tension dyad and ­imagined the pathways between the two differently. ­Women conceived of tension as a physically destructive force that could lead to diabetes, sometimes very rapidly but more often through slow accumulation. Biomedically oriented healthcare providers, by contrast, usually described hormonal stress pathways leading to insulin insensitivity. But many w ­ omen told me that they had first heard the idea that their diabetes might be related to tension from their endocrinologists. Given the ambiguity even in the medical lit­er­a­ture,

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this confusion is certainly warranted, and is another reason why the use of both biomedical and experience-­based ways of knowing is so useful. The three explanatory models I have touched on ­here—­the biomedical research, Indian ­women’s perspectives on their diabetes causality, and Dr. Usman’s explanation—­reveal a series of hybrid etiologies of diabetes and distress, in which the conditions are definitively linked but ele­ments of expert knowledge appear and dis­appear as we toggle between perspectives. As medical anthropologist Linda Garro (1988) notes, “A central component of individual models [of illness] is an intersubjectively shared cultural model for the illness . . . ​[which] consists of both cultural knowledge specific to a given illness as well as knowledge about illness in general” (98). In other words, individual explanations for illness are hybrid creatures, consisting of complex combinations of shared models—­often multiple models—­and individual knowledge. In India, ­women’s models of “tension” are informed by multiple traditions of expert medical knowledge that recognize vari­ ous conceptions of “well-­being,” severe social stigma surrounding m ­ ental health issues, and the pragmatics of physicians working in the private healthcare sector. Physicians, unsurprisingly, w ­ ere most concerned with the effects of tension on ­women’s ability to effectively manage their diabetes, so this was where I turned next in my analyses of tension.

Tension, Depression, and Anxiety Given the many ideas circulating about tension, m ­ ental health, and well-­being, I could easily understand why the physicians with whom I worked ­were hoping I might demonstrate that tension was a synonym for depression or anxiety; this would corroborate their practice-­based hunches and potentially justify some of their antidepressant prescriptions. But the vagueness of the term, its ability to refer to varying levels of distress, and the fact that it seemed to be almost always related to social relationships led me to suspect from the start that tension might be something altogether dif­fer­ent than clinical depression or anxiety. To ­settle the question, I developed a detailed comparison of the relationships between tension and clinical depression and anxiety (Weaver and Kaiser 2014; Weaver 2017). Psychiatric diagnoses of depression, anxiety, or other m ­ ental illnesses are rarely made in India (and if they are made, they are rarely disclosed to the patient; Sousa 2016), so the physicians in my study w ­ ere basing their concerns about their patients’ m ­ ental health on clinical hunches. The pro­cess of obtaining a formal diagnosis of even a common ­mental disorder like depression is so socially costly that ­people ­will go to g­ reat lengths to avoid it. In North India, psychiatrists and psychologists are popularly known as paglon ki daktron (“crazy-­person doctors”), and being ­under the treatment of such a practitioner is extremely stigmatizing. Dr. Sharma explained, “It’s a stigma! My goodness, in this country g­ oing to a

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psychiatrist is—­mad, mad! You have to be, you know, r­ eally funny in the head.” And, she explained, the stigma occurs both inside and outside the ­family. “If you are living in a joint ­family, and you have a mother-­in-­law and father-­in-­law, and if they get to know that the daughter-­in-­law—­even if the daughter-­in-­law is fifty-­ six or sixty [years old]—is ­going to a psychiatrist, she might have a tough time. That’s the biggest prob­lem, ­really, the stigma that, ‘Oh my God, what ­will they say, now that I’m ­going to a psychiatrist?’ ” The technical-­sounding term depression implies an intrinsic and even potentially ge­ne­tic defect in the individual that could extend to other f­amily members, thus besmirching the f­amily’s reputation and making the sufferer into “a ­mental patient.” This constitutes a ­great risk in a society like North India’s, where ­family reputation is a key criterion on which the marriageability of young adults is judged. Dr. Gupta explained, “If you ask [female patients] if t­ hey’re depressed, they say, ‘No, why should I be? My husband’s g­ reat, kids are g­ reat, blah blah blah.’ If you tell them they have depression, t­hey’ll hate you.” Another diabetologist told me he would lose patients if he took the risk of referring them to a psychiatrist. Making such a referral was not, he claimed, in the best interest of his patients’ diabetes control; nor ­were any private physicians I met keen to turn away patients. Instead, physicians often resorted to the language of “tension” to broach the subject of depression or anxiety with a patient. Dr. Gupta explained, “You have to do it delicately. If you say, ‘You seem to have a lot of tension,’ they love that. It’s ­because of the stigma. If it’s depression, then you are a [­mental] patient. If it’s tension, then it’s something somebody ­else has done to you.” An Indian psychiatrist in Ecks’s (2014) study also reported that handing his patients a diagnosis of clinical depression was a bad idea; instead, explaining that p­ eople ­were suffering from an excess of “­mental tension” was “the language they understand, and that is how we treat them” (165). Such approaches to diagnosis and treatment are common in India, and this extends to prescription of antidepressant medi­cations (Sousa 2016). Dr. Saxena felt that the addition of an antidepressant often improved his patients’ self-­care, even if they never disclosed a depression prob­lem, and even if they ­were never told that the medi­cation they ­were prescribed was an antidepressant. Anthropologist Stefan Ecks’s work on psychopharmaceuticals in Calcutta describes how ­these drugs are often prescribed with ­little or no explanation of their purposes, effects, or potential side effects (Ecks 2014). Like the psychiatrists in Ecks’s study, the diabetes physicians with whom I worked often explained antidepressants using euphemisms; for example, they told patients that ­these ­were medi­cations to “calm the mn [heart-­mind],” “reduce tension,” or “reduce carbohydrate cravings.” This was all done with patients’ best interests in mind; the physicians’ goal was to reduce the stigma associated with psychoactive medi­cations and thus (hopefully) increase their adherence to their diabetes-­treatment protocol and, by extension, their well-­being.

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Before delving into a comparison of tension and biomedical psychiatric categories of distress, I want to emphasize once again how rarely w ­ omen used words like depression or anxiety in conversation. This is impor­tant ­because, as an anthropologist, I am generally much more interested in the ways w ­ omen describe their lives than in the ways a biomedical doctor might. Only 10 out of 306 ­women I spoke with over the entire course of the research talked about “feeling depressed” or “having depression,” and they belonged exclusively to wealthier English-­ speaking groups. Below are a few examples: I had depression a year ago, but now I’m controlling myself. —­Upper-­middle-­class homemaker, age sixty-­one The ­thing is, I have a ­little depression. I know. But now I have taken myself out of this depression. —­Wealthy socialite, age sixty I used to have anxiety [ghabrahat] and restlessness. Around the time of my ­daughters’ marriages, my health was bad for a w ­ hole month. I fell into depression ­because of tension. I ­couldn’t sleep then, but now I’m fine. —­Upper-­middle-­class homemaker, age fifty

­There was an obvious classed aspect to the usage of the term depression. It was also striking to me how all of ­these ­women made sure to clarify that their depression was a ­thing of the past, something they had pulled themselves out of by sheer force of ­will. This suggests the extent to which the term carries a connotation of personal responsibility and character flaw, reflecting again the neoliberal ideals of self-­actualization, happiness, and normalcy that I introduced earlier in this book (Esposito and Perez 2014). The implication ­here is that depression is a form of inappropriate self-­indulgence that can be remedied if one learns to “control oneself ” or “take oneself out of this,” as the w ­ omen said. Using the word depression was a very unfamiliar and for many a very unappealing way to talk about distress, which was why I felt it so impor­tant to focus on tension. To study tension, I first tried to systematically capture what w ­ omen meant when they used the word. I used ­free listing (Borgatti 1999) to ask a group of sixty-­ two ­women with and without diabetes to list words or feelings they associated with tension (Weaver and Hadley 2011). In total, twenty items ­were mentioned in­de­pen­dently by at least two ­women; ­these included emotional (e.g., anger), behavioral (e.g., crying), and physical (e.g., weakness, headaches) symptoms. Of ­these twenty items, eleven are very similar to items in the Hopkins Symptoms Checklist-25, the standard instrument for depression and anxiety symptoms (see ­table 4.1). Th ­ ese findings corroborated my hunch that tension might have a relationship with depression and anxiety, but they also suggested that tension was not directly equivalent to ­either one.

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Comparison of items in the Hopkins Symptoms Checklist-25 and the locally derived tension scale developed in this study

Hopkins Symptoms Checklist-25 for depression and anxiety

  1. Suddenly scared for no reason   2. Feeling fearful   3. Faintness, dizziness, or weakness   4. Ner­vous­ness or shakiness inside   5. Heart pounding or racing   6. Trembling   7. Feeling tense or keyed up†   8. Headaches†   9. Spell of terror or panic 10. Feeling restless or ­can’t sit still† 11. Feeling low in energy, slowed down† 12. Blaming yourself for ­things† 13. Crying easily† 14. Loss of sexual interest or plea­sure 15. Poor appetite† 16. Difficulty falling asleep, staying asleep† 17. Feeling hopeless about ­future† 18. Feeling blue† 19. Feeling lonely 20. Thought of ending your life 21. Feeling of being trapped or caught 22. Worry too much about ­things 23. Feeling no interest in ­things† 24. Feeling every­thing is an effort 25. Feeling of worthlessness †

Tension assessment checklist

Feeling angry Feeling troubled or upset Frequent mood swings Feeling disappointed due to unmet expectations Being irritable Feeling oversensitive Feeling stressed out, tense† Headaches/migraines† Feeling like hitting someone or becoming physically violent Feeling restless† Feeling weak or tired out† Blaming ­others or taking out anger on them† Crying† Stomach pain, gas, or digestive prob­lems Loss of appetite† Prob­lems sleeping† Feeling hopeless† Feeling bad for no par­tic­u­lar reason† Negative thinking

Not feeling like ­doing anything at all†

Similar items are arranged adjacent to each other and marked with this symbol.

Reproduced by permission of the American Anthropological Association from Ethos, vol. 39, no. 2, pp. 211–225, 2011. Not for sale or further reproduction.

I eventually reduced this list of twenty items even further to a final set of fourteen by combining similar items, and I turned them into a quantitative scale that mirrored the structure of the depression and anxiety screening tool (Weaver 2017). For instance, the item “anger” was one of the most commonly mentioned tension symptoms during ­free lists. To turn this into a questionnaire item, I simply asked ­women, “To what extent have you felt anger in the last two weeks?” with the response categories “a lot,” “somewhat,” “not at all,” or “n/a or no answer.” D ­ oing this for each of the fourteen tension items resulted in a scale that would allow me

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to quantify how much w ­ omen ­were experiencing the symptoms that they themselves had told me ­were characteristics of tension. As with any new scale, I had to conduct psychometric testing for validity and reliability before it could be used in the study. I tested the validity of the tension scale with a group of thirty w ­ omen. The goal of t­ hese tests, described in more detail elsewhere (Weaver and Kaiser 2014; Weaver 2017), was to ensure that the scale made sense to ­people (ethnographic validity, in anthropological terms), that the items in the scale ­were related closely to one another (internal validity, in statistical terms), and that the scale as a w ­ hole had an internal structure I expected (unidimensionality). The tests all indicated that the scale was performing well, so I incorporated it into the interviews I conducted with the full sample of 180 ­women with diabetes in my study. I added another 100 ­women without diabetes to serve as a comparison group for the ­mental health questions that are the topic of this chapter. At the same time, I also used the standard depression and anxiety symptom screener to collect information about all 280 w ­ omen’s psychiatric conditions from a biomedical perspective. Not surprisingly, w ­ omen with more depression or anxiety symptoms consistently reported more tension in their lives. Wealthier w ­ omen and t­ hose with more education typically reported less depression, but no less tension or anxiety. Thinking back to Manpreet’s story, if the ­family had been wealthier, one of the main sources of tension (finances) might have been alleviated, so she might have had less distress. Th ­ ese findings agree with the established lit­er­a­ture that demonstrates higher depression in low-­SES groups (Lorant et al. 2003), and higher depression among ­people who experience stressful life events like financial prob­lems and ­family conflict (Cochrane and Robertson 1973). It was somewhat ironic that although the wealthier ­women ­were the only ones in my study who used words like depression to describe distress in their lives, ­women from lower-­SES groups ­were actually the ones who suffered from the highest levels of anxiety and depression symptoms. Despite the fact that they appeared to bear a heavier burden of ­mental ill health, the poorer groups ­were the ones least likely to name or receive treatment for depression. ­There ­were some similarities in ­women’s experiences of tension and depression and anxiety, but ­there ­were impor­tant differences as well. ­Women rarely used tension to describe the feelings of existential angst that are characteristic of depressive disorders, such as questioning the meaning of one’s life. Tension was its own form of suffering—­not simply an idiom for depression, but a phenomenon linked in ­people’s minds specifically to modern urban living and to social dynamics that subjugated w ­ omen’s desires, such as the f­ amily conflicts around d­ aughters and daughters-­in-­law in Shila’s and Manpreet’s narratives. Like Snell-­Rood’s (2015a) interlocutors who w ­ ere ­women living in New Delhi’s slums, w ­ omen in my study ­were often expected to “swallow pain” to maintain ­family harmony. That is, they ­were expected to absorb (but not reflect) frustrations and hurts for the sake

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of the ­family’s greater good. Tension was therefore not only constituted through social conflict, but was addressed through social maneuvering that deprioritized ­women’s distress.

Systematic Relationships between Diabetes, Depression, and Tension: The Big Surprise As part of my strategy to assess what was ­going on in ­women’s lives from as many perspectives as pos­si­ble, I used multiple methods to mea­sure depression, anxiety, and tension. ­These included qualitative discussion of what ­these terms meant to ­women, structured discussion of what their symptoms might be, and symptom scales that allowed me to compare levels of distress between individuals. The results across t­ hese vari­ous data sources w ­ ere unequivocal: no m ­ atter how I mea­ sured it, this appeared to be a very stressed group of ­women. When I asked ­women about depression and anxiety symptoms using the Hopkins Symptoms Checklist, a very large number reported enough symptoms that they met the standard criteria for “clinically significant” levels of symptoms published with the scale: over 26 ­percent (74 individuals out of 280), both with and without diabetes, reported clinically significant levels of anxiety symptoms; 18.2 ­percent (n = 51) reported clinically significant levels of depression symptoms; and 13.6 ­percent (n = 38) reported both concurrently. Th ­ ese levels are higher than the prevalence of common ­mental disorders like depression and anxiety reported in the epidemiological ­lit­er­a­ture for urban populations in India and other parts of the world, which tend to range between 10 and 15 ­percent (Andrande et al. 2000; Patel et al. 1999; Poongothai et al. 2009). The fact that over a quarter of the sample reported high anxiety symptoms is especially noteworthy. I assumed that the high stress levels in this group might be ­because over half of them w ­ ere dealing with diabetes, a quintessentially stressful condition. This was, however, not the case. When I compared levels of depression and anxiety symptoms among the diabetic and nondiabetic groups, ­there was no significant difference. Even more compelling, w ­ omen with diabetes who had more symptoms of depression actually had slightly better blood sugar control than w ­ omen with fewer symptoms of depression. This was quite puzzling. At first, I assumed that I must have done something wrong. Maybe my depression, anxiety, and tension mea­sure­ment tools simply did not work properly. Th ­ ese emotional states are, a­ fter all, highly subjective and therefore not well suited to quantification. However, I made e­ very effort to ensure their validity and reliability in this context, and it was clear during the interview pro­cess that p­ eople understood what I was talking about. Maybe some w ­ omen underreported ­mental health concerns when they ­were aware that they ­were being assessed by a questionnaire, but felt more comfortable discussing distress in an unstructured way during interviews; several ­women expressed discomfort when

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I conducted formal m ­ ental health assessments. But if that w ­ ere the case, I would have expected to see low overall levels of depression and anxiety symptoms, not the high levels that emerged from the study. Maybe t­ here was something strange about my sampling method that selectively biased the group ­toward ­women who would be more stressed in general, such that having diabetes would not ­really make a difference in their stress. Understanding this surprising result became a guiding motivation for my subsequent analy­sis and writing about the research. ­There are ­really two questions embedded ­here. First, why would w ­ omen with good diabetes control be more depressed than t­ hose with poor diabetes control? And second, why would ­women with diabetes not be more depressed than ­women without diabetes, given the lit­ er­a­ture suggesting that diabetes can be a very depressing disease to have? I ­will return to ­these questions in ­later chapters, but ­here I want to offer a few initial thoughts to help frame ­these results. As to the first question—­why ­women with good diabetes control would be more depressed than t­ hose with poor control—­there is some limited evidence from cohort studies in Spain and the United States that mirrors my findings (de Jonge et al. 2006; Golden et al. 2008). The authors of ­these studies speculate that ­people with better diabetes control might have more symptoms of depression ­because it takes so much work to maintain good blood sugar, work that can be stressful. Although this is certainly not always true (as in the case of Kalpana, the el­derly ­woman from chapter 3 who maintained excellent ­mental health and diabetes control with the help of her extended ­family), in my study, efforts to maintain tight control of blood sugar did sometimes come at the cost of one’s ­mental health and quality of life (as it seemed to be d­ oing for Manjot, the wealthy ­widow also from chapter 3). The tradeoff between blood sugar control and quality of life is a constant tension in diabetes management, and the seemingly paradoxical result of my study could be a reflection of that. As to the second question—­why ­women with diabetes w ­ ere not more distressed than ­those without it—­there are several reasons why this might be the case. Part of the answer may lie in the mediating influence of socioeconomic status. The contrast in life circumstances between Sita and Manjot, the domestic worker and the wealthy ­widow from chapter  3, demonstrated that socioeconomic status profoundly shapes all areas of life, not only diabetes-­management activities. Knowing this, I conducted a series of statistical tests to examine the potential moderating influence of socioeconomic status on the diabetes-­depression relationship. ­These revealed that the depression-­diabetes relationship worked differently for lower-­and higher-­SES groups. Figure 4.2 depicts this interaction graphically. It shows that as a w ­ oman moves from being nondiabetic to having diabetes (on the X axis), her mean depression score increases if she belongs to a high-­SES group, as shown by the positive slope of the small-­dashed line ­toward the bottom of the figure. If she belongs to a lower-­SES group, however,

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Depression mean standardized predicted value

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figure 4.2 Mean depression score, diabetes status, and socioeconomic status derived from a linear regression model.

her predicted depression score decreases as she moves from the nondiabetic group to the group with diabetes, as shown by the negative slope of the larger-­ dashed line ­toward the top of the figure. Why might wealthy ­women experience increased depression symptoms as they get diabetes, whereas the opposite is true for poor w ­ omen? Perhaps this is partially the case b­ ecause diabetes tends to emerge in impoverished groups as families become increasingly wealthy. For ­women in a lower socioeconomic bracket, who are more depressed anyway, an increased standard of living could represent significant overall lifestyle improvement, even if it does lead to the not-­so-­positive outcome of diabetes. For ­women who are already wealthy, the addition of diabetes to their lives would prob­ably not come with any gain in their standard of living that could buffer depression associated with the diabetes diagnosis. In other words, diabetes might only be depressing if one’s standard of living is already relatively high; ­those from lower socioeconomic groups have more to gain, whereas ­those from higher socioeconomic groups have more to lose, from diabetes. Or perhaps, like Sita, t­ hose from lower socioeconomic groups are already struggling, so the addition of diabetes to existing life challenges feels less disruptive than it might for someone unaccustomed to such hardship. Emily Mendenhall has found that among Mexican immigrant w ­ omen in the United States, m ­ ental ill health and

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biological distress are already pres­ent, and diabetes is just one additional f­actor among the many stressors in their lives (Mendenhall 2012). The statistical analyses on ­mental health symptoms among ­women with diabetes also provided some clues about the ways in which diabetes and distress interact over time, and over the course of w ­ omen’s lives. In my study, w ­ omen diagnosed with diabetes more recently reported higher depression, anxiety, and tension symptoms than did ­those who had had diabetes for a longer time. This was true even when controlling for age differences between ­those who ­were newly diagnosed and ­those diagnosed longer ago. Ethnographic work on chronic diseases supports the idea that recently diagnosed individuals, although perhaps less heavi­ly burdened by the l­ ater physical complications of their diseases, must cope with a front-­loaded burden of the emotional, identity, and illness work associated with coming to terms with a long-­term illness (Corbin and Strauss 1985). As I described in chapter 3, this work involves learning to manage the illness on an everyday basis, refiguring one’s identity and social roles around the diagnosis, confronting one’s mortality, and dealing with potentially strong emotional responses to the idea that one has an incurable illness (Becker 1997; Charmaz 1991; Corbin and Strauss 1985; Crooks 2007; Estroff 1993; Murphy 1987). W ­ omen, too, often talked about getting diabetes during a time of unusual distress. So, although statistical analyses of the data from the 280 diabetic and nondiabetic w ­ omen in my study showed that t­ hose with diabetes appeared to be no more depressed or anxious than ­those without it, a closer look at the data suggested that ­women’s distress is patterned in impor­tant ways. First, socioeconomic status appeared to mediate the m ­ ental health–­diabetes relationship, such that low-­ income ­women with diabetes ­were less likely to report high symptoms of depression than high-­income ­women with diabetes. This suggests that diabetes may be a source of depressive feelings only if a ­woman already has high enough socioeconomic status that she need not worry about other, more pressing life concerns, such as making a living. ­Women diagnosed more recently with diabetes reported significantly higher distress than ­those who had been living with diabetes for a longer time, suggesting that t­ here may be an adjustment period that leaves w ­ omen especially prone to m ­ ental ill health during the first two years of their illness postdiagnosis.

Conclusion: Distress and Diabetes ­ omen in urban India are developing a reputation for being some of the most W stressed in the world. The Nielsen Com­pany, a global marketing research firm, released a report in 2011 (the same year I did most of this research) entitled ­Women of Tomorrow (Nielsen 2011). The com­pany had surveyed w ­ omen in twenty-­one developed and developing countries, and this was the main publication coming out of it. Although it was intended to help companies market products t­ oward

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­ omen, much of the media attention around the report focused on its cross-­ w cultural mea­sure­ment of stress. Nielsen asked ­women in each country to say if they felt not at all stressed, stressed some of the time, or stressed most of the time. Of all the countries included in the study, ­women in India reported the highest levels of stress, with a full 87 ­percent saying they felt stressed most of the time, as opposed to ­women in Malaysia and Sweden, the two least-­stressed countries, where only 44 ­percent of ­women reported the same (Nielsen 2011). This led to headlines about how Indian ­women ­were the “world’s most stressed” (e.g., Hewlitt and Rashid 2011). More recently, in 2017, the United Nations’ World Happiness Report rated India rather dismally as 122nd out of 155 countries, noting a very significant decrease in average happiness since the first mea­sure­ment in 2005–2007 (Helliwell, Layard, and Sachs 2017). ­These may or may not be reliable sources on Indian ­women’s stress, but they do demonstrate the degree to which ideas about stress, unhappiness, and being chronically stressed are becoming part of mainstream ways of characterizing Indian w ­ omen on a global stage. In my work, the language of tension was the most common way ­women discussed this stress. Is tension one of t­ hose central words that anthropologist Evans-­Pritchard predicted would make or break an anthropological study? I believe it is. An examination of tension provides a win­dow into the broader priorities of life for ­these ­women. Tension is so common that it crops up all the time in conversation, but in my study ­women used it especially often to talk about the pushes and pulls of ­family needs and individual priorities, the aspirations involved in modern living, and the uncertainty surrounding impor­tant life transitions like educational attainment and marriage for their c­ hildren or grandchildren. A consideration of tension is impor­tant if one wants to understand diabetes experiences in North India, but it is not just about diabetes. I suspect ­there are a few ­factors that made the concept of tension as useful for ­women as it seemed to be. First is the fact that in North India, a w ­ oman expressing distress in the wrong way might be judged as inappropriately self-­centered. This is extremely impor­tant to understand ­because gendered ideals for ­women in this context heavi­ly emphasize self-­sacrifice on behalf of o­ thers (Cohen 2000; Ray and Qayum 2009; Snell-­Rood 2015a, b). Tension, a relatively innocuous term ­because it is so vague, allows ­women to disclose distress in a culturally acceptable way without appearing to be “complaining.” I ­will return in the next chapter to the crucial aspects of gendered self-­sacrifice for ­women in North India. Second, as I discussed earlier, tension often arises from interpersonal conflicts that ­women may not want publicized, lest they reflect poorly on the ­family or on themselves. One could imagine Manpreet, who felt so persecuted by her ­family’s insensitivity to her needs, using tension to refer obliquely to ­these stresses if someone asked her in passing, “How are you?” ­Toward the beginning of the discussion, before she began to talk in detail about her ­family stresses, she glossed it this way: “I ­don’t get bothered very much. Every­one gets a ­little bothered sometimes, and

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sometimes I get a l­ittle bit of tension.” Th ­ ere is something appealing h­ ere about being able to express distress in such a noncommittal fashion, especially in a cultural context where a ­woman cannot assume that a complaint ­will be received with sympathy. A third reason for the use of idiomatic expressions like tension is the fact that in India ­today, like China in the 1980s (Kleinman 1988b), biomedical psychiatry has not infiltrated laypeople’s talk about distress. Stigma persists around terms like psychiatrist, ­mental health, and depression (Conrad and Pacquiao 2005; Desjarlais et al. 1996; Raguram et al. 1996). Although tension is not merely a synonym for clinical depression or anxiety ­because ­these categories are not very relevant in North India, the expression is sometimes used to disclose severe distress that might be diagnosed as depression or anxiety if the person w ­ ere to visit a psychiatrist. This might have been the case for the w ­ oman I mentioned briefly earlier in this chapter who said, “I do feel sometimes like, ‘What kind of a life is this?’ Th ­ ere’s so much strug­gle.” I have spent quite a bit of time in this chapter comparing tension to clinical ­mental disorders for a ­couple of reasons. First, the doctors I worked with in many cases assumed that the term was a sort of “code” that ­women used for talking about depression. This was relevant for them as diabetologists ­because they felt confident that chronic distress compromised their patients’ diabetes control. They wanted to know if ­women simply used tension as a stand-in word for depression or anxiety in part b­ ecause, I think, they hoped it might corroborate their clinical hunches, and even help justify their practice of prescribing antidepressants for ­women who complained of a lot of tension. Second, I compared tension with depression and anxiety to address the longstanding debate in medical anthropology and cross-­cultural psychiatry over ­whether or not the ­human experience of distress has some common, universal core (Hahn and Gaines 1985; Kirmayer 1989; Nichter 1981; Weller et al. 2008). Is depression the same no ­matter where you go; does it look dif­fer­ent around the world; does it even exist in places where psychiatry has not dominated for the last few generations? Th ­ ese ­were relevant anthropological questions for the lives of the ­women in my study ­because diabetes physicians in Delhi ­were often working ­under the assumption that “tension” meant “depression.” My agenda was to see if I could detect meaningful differences between the idea of tension and the biomedical diagnoses of depression and anxiety. I believe I did so. Tension was generally related to depression and anxiety among the ­women with whom I worked, but not always. Depressed and anxious w ­ omen reported more tension than o­ thers, but plenty of nondepressed, nonanxious w ­ omen still had tension in their lives. In clinical language, this means that tension was sensitive to depression and anxiety, but not specific to ­these conditions. Moreover, tension did not function as a coherent, locally recognized illness category that has its own associated c­ auses or treatments, and therefore it cannot be considered a

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“cultural syndrome” in its own right (Hinton et al. 2010). Based on w ­ omen’s descriptions and on the statistical relationships between tension, depression, and anxiety, I concluded that tension is a blended syndrome that can be related to, but is certainly not synonymous with, clinical depression and anxiety. It is a term used to index socially based distress, not a clinical diagnosis. Maintaining this distinction is, in my opinion, impor­tant for d­ oing justice to the uniqueness of tension. Perhaps the most surprising aspect of my study of tension was that although ­women with diabetes reported a lot of it, they reported no more than did the ­women without diabetes. This is compelling, first, b­ ecause it contradicts the large body of medical research suggesting that ­people with diabetes are much more likely to be depressed than ­those without it, and second, ­because it led to some analyses that revealed impor­tant differences between subsets of the ­women in my study. ­These analyses demonstrated, for instance, that socioeconomic status shapes how likely a ­woman with diabetes is to be depressed, a trend that already emerged qualitatively from the narratives I presented in the last chapter. They also drew attention to the fact that ­women diagnosed more recently with diabetes tended to report more anxiety and more disability in everyday tasks than ­women diagnosed longer ago. Further, I noted that ­women with diabetes who had higher blood sugar reported more distress than t­ hose with lower blood sugar. This is not to say that the ­women with whom I worked did not experience distress. Overall, they reported remarkably high levels of depression and anxiety. But the question remained: why d­ idn’t ­women with diabetes have more distress in their lives than t­ hose without it? In the chapters that follow, I w ­ ill begin to build the case for what, I believe, helps explain the comparatively good m ­ ental health among ­women with diabetes in this context, even though in general the ­women with whom I worked w ­ ere very stressed.

5 • SACRIFICE Domesticity and Care among W ­ omen with Diabetes

Rita was feeling off; she had been getting more tired than usual during her daily routine of laundry, cooking, cleaning, and working in the f­ amily’s large, well-­organized general store. This general feeling of “weakness” (kamzori), as she described it to me ­later on, was making it hard for her to catch her breath as she climbed up and down the stairs between the store and the upstairs bathroom, which she was feeling the need to do with increasing frequency. Rita was only thirty years old at the time. She thought perhaps she was pregnant, but she had lost weight rather than gained it. One day, she felt so horrible that she could not even get out of bed in the morning and, to her embarrassment, lost control of her bladder. With t­ hese strange symptoms that could no longer be ignored, she fi­nally saw a doctor, who tested her blood sugar and found it dangerously high, at over 400 mg/dL. By the time Rita and I met, she was forty, and this had all tran­spired a de­cade ago. When I arrived at her home in the late morning on the day we had agreed upon, Rita looked as though she had just woken up, and as if she could not quite figure out what a foreign w ­ oman was d­ oing on her doorstep. Nevertheless, she quickly regained her composure and led me through a narrow passageway and up the staircase that took us to the f­ amily’s living quarters above the store. A rather quiet ­woman, she looked expressionlessly at the floor, hands folded in her lap, while her husband answered most of my questions for her. She hardly seemed to register what he was saying. I began by asking how often she went to the doctor, but before she could respond, her husband jumped in, “Only once e­ very year or two she goes for a checkup.” He said this almost with a touch of pride in his voice. “One only goes to the doctor when one’s health is bad. Her health ­doesn’t go that bad; she stays 100 ­percent okay.” We chatted a bit more about how she felt about the healthcare she was receiving, and then her husband remarked, “Like in March, she was admitted in the ICU for fifteen days.” 95

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“Wait, what?” I balked, thinking I must have misunderstood. This sounded quite far from the rosy picture of “100 ­percent okay” health he had just described. “We had gone to Bihar [state],” he explained. “She left her medicines ­behind, and when we got t­ here her health went bad. Th ­ ere ­aren’t any good doctors t­ here. We did consult one, and he gave her a glucose drip [an IV, b­ ecause he assumed she was suffering from hypoglycemia without checking her blood sugar].” It turned out that her sugar was actually high, and the drip sent her sugar even higher, propelling her into a diabetic coma. “This made her health even worse. It was some doctor in Gaya. Th ­ ere’s a famous doctor t­ here with so many patients; we saw him next. He sent me to a nursing home [small private hospital], and ­there I saw so many p­ eople that I thought, ‘This ­will take so long that ­she’ll die while ­we’re waiting!’ ” Fi­nally, he gave up and deci­ded to return to Delhi where he knew good doctors that he could trust. “So we caught a train, and while we ­were sitting her tongue protruded out of her mouth. It was totally dry and black. The way back was so long; it took forty-­eight hours. When we fi­nally reached Delhi her sugar had reached 800, then it crossed 1,000.” Rita was truly on the verge of death at this point. Her case was so dire that he had trou­ble finding a doctor who would take her on. “When we got ­here, I took her to Apollo hospital [one of Delhi’s best-­known private hospitals], but they ­wouldn’t admit her. They told us ­there was no hope for her case. I said, ‘Doctor-­ sir, I’ve brought her from Bihar. Please admit her, I’ve brought her so far.’ ” But the doctor would not relent. “I called up another doctor whom I trust, and he said, ‘­Brother, this ­isn’t a ­matter of trust. If anything happens to her, I’ll be mixed up in it. So you have to sign a document that it’s your own responsibility to admit her ­here.’ ” In India, physicians routinely ask patients to sign contracts indemnifying them from responsibility for malpractice (Dasgupta 2014), and ­after Rita’s husband signed, the doctor fi­nally agreed to admit her. “They put her on a stretcher and attached fifteen or sixteen machines to her. The doctor said, ‘For the next thirty-­six hours it’s your responsibility what happens to her. If she’s still alive ­after thirty-­six hours, then s­ he’ll be my responsibility.’ ” She remained in a coma for eight days. This chapter examines what kinship dynamics and cultural concerns allow ­women like Rita to end up in harm’s way, even as they are surrounded by f­ amily members who depend on their caring ­labor. How can we account for conflicting intrafamily understandings of health for an illness where a ­woman nearly dies but “stays 100 ­percent okay,” according to her husband? As opposed to chapter 3, where I explored biomedical moralities and structural ­factors that ­shaped what ­women ­were or ­were not ­doing to manage their diabetes, ­here I am explic­itly focused on the broader cultural norms under­lying ­women’s care of self and ­others. Implicated, I argue, is a par­tic­u­lar kind of gendered self-­effacement that

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holds an impor­tant cultural place for w ­ omen in North India, but which may get in the way of diabetes self-­management. Rita’s experience is a starting point for thinking about how diabetes, domesticity, and self-­sacrifice intertwine. It also illustrates why it was so impor­tant in my study to assess biological status along with ­people’s stories of illness. Had I taken Rita’s husband at face value, I might have assumed that she was a relatively healthy ­woman who was simply rather shy. Her physiology communicated a dif­ fer­ent version of the story: her health was in real danger. Her glycated hemoglobin of 8.3 ­percent suggested too many fluctuations in her blood sugar (though it was not as high as I expected, based on what her husband had told me), but her C-­reactive protein was very high at 7.5 mg/L.1 The American Heart Association states that C-­reactive protein above 1 mg/L indicates some level of cardiovascular risk, so Rita’s 7.5 mg/L indicated a very high risk for heart disease. She also had elevated Epstein-­Barr virus antibodies, suggesting a taxed immune system, at 165 ELISA units (approaching the cutoff of 178 units for the highest quartile in my study).2 But the body’s side of the story is only one of several narratives I collected about Rita’s health status. Another was the recounted story itself—­including both the spoken and the unspoken aspects of the narrative. This included Rita’s countenance and be­hav­iors (passive, maybe even ashamed) and her and her husband’s co-­constructed verbal account of her illness (a dramatic story of health crisis framed in a way that suggested, rather counterintuitively, that it r­ eally ­wasn’t so bad). The recounted story also, importantly, included ­family members’ responses to Rita’s illness, and statements about the ways they cared for her, worried about her, but also resented her for her poor health. And the ­family did care for her. As Rita’s husband continued the story of her reawakening from the eight-­day coma, I found his faith in her innate ability to return to normal a­ fter this crisis quite moving. “When I went inside and talked and tapped her hand, tears started coming down her cheeks. The doctor said, ‘She’s no longer in a coma. She’s hearing what you say.’ Then he said, ‘Now her case is clear. S­ he’ll respond positively by tomorrow.’ ” ­After a few more hours, Rita opened her eyes. “The doctor called me in, and they asked her if she recognized me. She started crying and said, ‘Yes.’ ” But it was still not clear what long-­term damage she might have sustained from this diabetic crisis. “Her entire body was so dry, like a papad [crispy wafer]. The doctor said, ‘She may have trou­ble speaking in the ­future or have a stammer.’ I said, ‘Doctor, ­she’ll be fine. ­Don’t you worry a bit.’ ” Rita did improve rapidly, and remarkably, she suffered no permanent brain damage from the coma. Having recounted this story, Rita’s husband excused himself to return to the store. Then Rita’s bright, talkative teenage ­daughter took over, bringing up another diabetes-­related incident that had happened just last week. “Sometimes she

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forgets her regular routine,” explained her d­ aughter. “Sometimes she forgets to take her [insulin] injection at night and takes it the next morning instead.” Rita agreed, and a­ fter her husband left the room, she began to take over the storytelling herself. “When it’s hectic, I sometimes ­can’t manage it. I know I need to take it before eating,” she said. But, she explained, sometimes other t­ hings got in the way. “I go to satsang,” a Hindu religious gathering during which w ­ omen sing devotional songs and usually fast. ­Those with diabetes, however, should not fast ­because this puts them at risk of low blood sugar. “So last Sunday, I took my injection [without eating] and went. When I came out at eleven thirty, my sugar was very low. I felt like I should eat something; it was difficult even to walk.” Rita’s husband got frustrated ­because he did not think she should have gone to the ­temple in the first place. “My husband started scolding me, ‘You ­shouldn’t come along with me, your health is always bad, and it creates a prob­lem. ­We’ll get some Lantus [insulin produced by the Sanofi com­pany] on the way home.’ Walking between the t­ emple and the chemist my sugar went so low—.” H ­ ere I interjected that Rita could carry a piece of candy with her in case she experiences low blood sugar like this, but her d­ aughter responded, “This is her biggest weakness. ­She’ll never do that.” Rita continued, “Just ­after I told the chemist I needed Lantus, I asked for a toffee ­because my sugar was down. He took out a toffee, opened it, and told me to eat it right away. I was sweating a lot. I could barely stand up. Then he went into his h­ ouse and brought me back some glucose solution he had mixed up. He told me, ‘Sit down ­here for a minute or two. Your health is too bad, just sit down.’ Even ­after drinking the glucose I ­didn’t get better ­because my sugar had gone so low.” Rita’s ­daughter said, “You should make a separate rack for yourself with all the ­things that you need when you go out,” so that she would remember to carry some candy and medicine in case something like this happened again. But Rita just shook her head and responded, “When my health got so bad, it seemed to me that I ­shouldn’t have gone out at all.” ­People often experience this kind of social self-­limitation ­after getting an illness like diabetes. As I discussed in chapter 3 with Manjot, physical disability and ­mental distress related to having a chronic illness can precipitate limitations in social activity, often self-­imposed, when a person feels unwell. This is natu­ral, but it can also be part of a self-­defeating cycle like the one in which Manjot was ensnared, where social isolation seemed to exacerbate her m ­ ental health prob­lems, ­mental health prob­lems seemed to exacerbate her diabetes prob­lems, and diabetes prob­lems exacerbated her social isolation and ­mental health prob­lems in a vicious cycle. Rita seemed to be ­going through something similar. Rita’s ­daughter glossed this as her ­mother having “lost confidence” ­after her diabetes diagnosis. When her d­ aughter said this, Rita responded, “Maybe, yes, it does seem to me that [my confidence] has decreased.” She elaborated, “I get anxious [ghabrahat] to go out. Since I’ve been sick, I’ve felt tension: ‘I’m g­ oing out, how? What if I get sick while I’m out?’ . . . ​I ­don’t feel like g­ oing ­here and ­there

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and talking with p­ eople, mixing up with them.” For instance, said Rita’s d­ aughter, when her niece got married recently, Rita had no interest in helping with the wedding or even giving a gift. This would have constituted a major social violation if Rita’s d­ aughter had not stepped in and encouraged Rita to “take an interest,” as she said, by which she meant fulfilling the social obligation of getting an appropriate gift and showing up at the event. Almost incredibly at this point, Rita’s health crisis expanded even further in real time. I had noticed that Rita had been getting more quiet and withdrawn ­toward the end of the interview. Thinking this might be a reaction to her husband and ­daughter’s criticism of her be­hav­ior, I noted it and let it pass. A ­ fter an hour and a half of conversation, I fi­nally asked her what was wrong, and she responded, “My sugar is ­going down. It’s not such a big issue.” I checked it immediately, and it was 29 mg/dL, dangerously outside the low boundary of 70 mg/dL recommended for p­ eople with diabetes and, frankly, low enough to put her in a hypoglycemic coma. (My instrument was prob­ably not working accurately ­because this level is so low that most ­people would prob­ably be unconscious; nevertheless, ­there was no question that her sugar was very, very low.) Rita’s ­daughter ran downstairs to the store and retrieved a small choco­late bar. When I asked Rita why she ­didn’t say something to me she responded, “Oh, look, I d­ on’t pay enough attention, but I know I should eat something ­every three and a half hours. I ­didn’t know that my sugar would go down at this time, other­wise I would have made some food and eaten a l­ ittle something.” Rita’s last statement captured two themes that ran throughout many, many ­women’s discussions of their diabetes management: self-­critique (“I d­ on’t pay enough attention”) and, at the same time, self-­exculpation (“I d­ idn’t know my sugar would go down”). Her ­family, too, was engaged in this push-­and-­pull of blame and exoneration. In some ways, they w ­ ere unusually supportive of her diabetes. Rita’s husband described in detail how he collected a mixture of vari­ous grains from the store’s stocks and took them to the miller himself so that Rita would have multigrain flour to make special rotis for herself, and how he soaked fenugreek seeds (an Ayurvedic treatment for high blood sugar) overnight to remove the bitterness so she could keep them on hand to eat if her blood sugar got high. The ­family had changed their diet along with Rita, giving up sweets so completely that Rita’s d­ aughter said they just “chuck them out” if anyone brings them over as a gift. This was quite unusual among the families with whom I worked, who typically only changed their diet as a group if the male head of ­house­hold was the one with diabetes. Yet the ­family also harbored deep resentment ­toward Rita for her health prob­ lems. Rita had always been the primary domestic caretaker in the ­house. ­There had been a lot of shifts in the h­ ouse­hold division of l­ abor since Rita got sick, and her ­family found this difficult to cope with. Her husband accused her of eating large quantities of white rice in the pantry. “She eats it in secret, but rice is bad for

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her,” he complained. “­There’s a lot of ­house­hold work. If she eats rice, then ­she’ll get leg pain, and s­ he’ll create conflict b­ ecause she c­ an’t do any work.” Rita’s impairment also affected her ­daughter, who was in high school and hoped to go to medical school. She was the one who ended up shouldering the burden of domestic responsibility in her ­mother’s stead. She explained, “I ­don’t know where my childhood has gone. I’m now sixteen years old, but I have no idea how I got ­here. It’s been four or five years since I’ve been looking a­ fter the h­ ouse­hold, since M ­ ummy got diabetes. I make the food and do the cleaning.” Despite her illness, Rita’s husband encouraged her to work in the store “eight or nine hours” a day ­because “if she stays shut up at home, she feels sick. When she’s at the shop she keeps wandering around and feels better.” Rita seemed to agree with her ­family that her uncontrolled diabetes was, ultimately, her fault. “Every­one cooperates this way [helps me manage my diabetes],” she said. “If I ­don’t take care of myself, that’s a separate issue.” Rita’s diabetes experience was riddled with crises—in the months, weeks, and even moments surrounding our conversation. Yet, strangely to me as an outsider, neither Rita nor her husband expressed any urgency about this worrisome pattern, not even during the interview when her blood sugar was plummeting. Though at first glance the incongruence between her husband’s commentary and Rita’s biomarkers might seem odd, this disjuncture between experience and description is consistent with the versions of the story that Rita herself embodied: the first, expressed through her self-­dismissive language and actions; a second, expressed through the nonverbal dynamics of that discussion and centered on questions of care and responsibility; and a third, expressed through her serious health crises and blood biomarkers. Throughout, Rita was both a deeply self-­sacrificing individual who attempted to downplay her poor health, and an agent who solicited, even demanded, attentive care from her husband and ­children precisely by declining to care for herself.

“I ­Don’t Care about Myself” When I presented Rita’s story at a conference, someone in the audience stood up and asked, rather irately, “I mean—­does her ­family even care about her?!” To me, the answer was already clear. Her d­ aughter’s and husband’s scolding was certainly partly selfish in its motivation, but they also clearly wanted her to be well, for her own sake and theirs. Up for debate in my mind was not so much ­whether they cared, but how they cared, and why. Rita’s husband’s description of her emergency in Bihar demonstrated legitimate concern; so did her d­ aughter’s desire to get Rita to or­ga­nize her supplies so she could go out more easily. With ­these interactions in mind, I responded that of course they cared about her, but their care was sometimes eclipsed by the frustration they felt t­ oward her apparent refusal to care for herself. They ­were wrestling with the following questions:

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Who should be responsible for making sure an ill person in a ­family is alright? Is it the person herself? Her husband? Her ­children? A corollary to the audience member’s question “Do they even care about her?” is “Does she even care about herself?” Like Rita, w ­ omen in my study w ­ ere occupied with ­family concerns nearly all the time, and they usually prioritized ­these over themselves. Rita’s ­daughter complained, for instance, that Rita would only tell her f­amily once if she ran out of insulin. If someone did not remember to get it for her, she would simply go without rather than mention it again. Rita’s ­daughter thought this was ridicu­lous, but Rita viewed it as an act of care for her ­family. Her ­daughter explained, “She thinks that if w ­ e’re busy all the time and she asks us to do even more than ­we’re already ­doing, we ­will get irritated. If one is busy working all day in the heat, then one ­can’t keep track of all ­these ­things [so we forget sometimes]. Then she ­won’t take the injections again ­until she ends up in the ICU.” In a similarly self-­sacrificial fashion, an animated middle-­class ­woman who ran a lunch catering business out of her home remarked that she regularly prepared healthy breakfasts for her husband, but not for herself. “I’ll make [oat porridge] for him with milk for breakfast. But I d­ on’t care about myself. One day I’ll have to die. . . . ​I ­don’t take care of myself, I ­don’t think about anything, I just work with all my effort.” Both she and her husband ­were diabetic, but it was only he who got a healthy breakfast each morning. This sentiment—­“I ­don’t care about myself ”—­appeared again and again in ­women’s narratives. I think that this s­ imple statement holds some potential answers about how Rita’s situation ended up as badly as it did. For many ­women with whom I worked, the idea of self-­care seemed almost anathema. During early phases of the research, I wanted to get a sense of the contours of w ­ omen’s daily domestic work. I asked ­women with and without diabetes three questions: “What should a ­woman do ­every day to care for her ­family? For her community? For herself?” Although w ­ omen had no trou­ble generating long lists of responsibilities they felt w ­ omen should fulfill on behalf of their families and communities, many found it difficult to come up with even one self-­care activity that ­women should perform regularly. Some even seemed embarrassed by the question, looking down and giggling or glancing to another person in the room for suggestions about how they o­ ught to respond. Pausing briefly to think, one w ­ oman stated, “Actually, the thought never occurred to me.” ­Others said, “I ­don’t have time to think of myself. God does that,” and, “Responsibilities to myself? I d­ on’t think much about myself.” In a mix of Hindi and En­glish, a youthful homemaker wearing fash­ion­ able Western clothes explained to me, as she held her three-­year-­old son on her lap, “Apne bare mein zyada nahin sochna [I ­don’t think too much about myself], you know? The ­family comes first. If ­there is baki [extra] time, then I read a book or something.” “See,” explained a w ­ oman in another interview, “we must always put our families first. ­Women are normally seen as the builder of the ­family, the

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heart of the f­ amily.” ­Women made statements like this so often that it almost felt as if they ­were reading from a script. ­Women w ­ ere indeed “reading” from a shared cultural script when they made statements about self-­care. Indian feminist scholars have been writing about this self-­sacrificial ideal among ­women for de­cades (Basu 1998; Donner 2008; Fernandes 2006). Th ­ ese scholars observe that feminine ideals in con­temporary North India are or­ga­nized around the dual imperatives of maintaining a domestic orientation while still participating in modern pursuits. In chapter 2, I referred to this phenomenon as “domestic modernity,” but anthropologist Smitha Radhakrishnan indexes a similar concept with the phrase “respectable femininity” (Radhakrishnan 2011), and anthropologist Henrike Donner (2008) refers to it as a form of consciously “cultivated conservatism” characteristic of emerging elite and middle-­class ­women in Indian cities (Donner 2008, 11). Other scholars describe ­women’s self-­sacrifice in the domestic sphere as an idealized repre­sen­ta­ tion of “restraint and self-­sufficiency” (Cohen 2000, 236), or as the idea that “you should live for o­ thers” (Snell-­Rood 2015a), an axiom often repeated among the ­women with whom I worked. In what­ever turn of phrase they choose, this diverse group of scholars concurs that w ­ omen in modern North India are considered to be acting appropriately when they exercise the right amount of freedom and restraint, balance work and f­ amily (but prioritize f­ amily if they ever have to choose between the two), and, as Radhakrishnan puts it, maintain “a specific kind of virtuous morality” focused on piety, domesticity, and chastity while still engaging in explic­itly modern activities such as working outside the home (2011, 34). Domestic modernity is at once a reflection of the value placed on ­family over the individual in modern North India (choosing ­family over ­career, for example), and an indicator of w ­ omen’s partial movement away from this value (Radhakrishnan 2011). Although in conversation p­ eople often gloss this mode of attending to the domestic spheres as “traditional” (like Dr. Kumar’s explanation of ­women’s roles that opened chapter 2), scholars argue that this par­tic­u­lar configuration of domestic modernity is a relatively recent phenomenon, having gained momentum in the last thirty years as a tool of Hindu nationalism.

Domestic Modernity in Po­liti­c al, Religious, and Media Discourses The tight association between w ­ omen and domesticity, by many accounts, became a prominent aspect of ideas about “Indian womanhood” during India’s in­de­ pen­dence movement (Basu 1998; Chatterjee 1990; Das 2007; Fernandes 2006; Mankekar 1999; Sarkar 1998). The Partition of 1947 split the territory into Pakistan, the supposedly Muslim country, and India, the supposedly Hindu country. ­Because India was Hindu in its identity (though not its constitution), many of the men who or­ga­nized Indian patriotic campaigns accordingly looked

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to ancient Hindu texts for inspiration, where ­there is abundant reference to  ­women’s roles as domestic nurturers of the household-­as-­microcosm. This gave domestic femininity a sense of historical gravitas even if it was modern in origin. ­These leaders had plenty of material from which to draw. In the ancient Hindu texts, the association between femininity and sacrifice is central. For instance, the term pativrata (literally, “husband-­vows,” the ideology of the dedicated wife) is described in detail in the Laws of Manu, the most prominent ­legal text in the Hindu canon, which dates somewhere between the second ­century B.C.E. and the third ­century C.E. (Kelting 2009; Leslie 1989). Hindu priests and ­women themselves often didactically evoke the pativrata to explain the importance of w ­ omen’s devotion to their families (Donner 2008). The most central aspect of w ­ omen’s dharma (life duty), according to the Laws of Manu, is complete devotion to one’s husband, who should be “worshipped as a god by a faithful wife,” even if he is lacking in virtue himself (The Laws of Manu V, 154), translated in Kelting 2009, 16). ­Doing so, says the text, is a ­woman’s only path ­toward salvation (Holdredge 2004, 235). The pativrata appears as a central character in both of the sacred epics of Hindu scripture, Mahabharata and Ramayana. Th ­ ese didactic narratives expound on how Hindus should fulfill their dharma. The heroine Sita’s abduction by Ravana, the demon king who wants her for his queen, is a pivotal event in the Ramayana, for instance. Sita’s husband Ram rescues her, but before he accepts her back as his wife, he demands that she prove that her honor has not been compromised during her kidnapping (that is, that she did not have sex with Ravana). Sita throws herself on a blazing fire, praying to the fire god Agni to protect her if she is “pure.” Agni delivers her unharmed into the arms of Rama. This episode evokes sati, a power­ful act of self-­sacrifice in Hindu religion in which a ­widow commits suicide by throwing herself on her husband’s burning funeral pyre. It also is a larger-­than-­ life repre­sen­ta­tion of more mundane fire sacrifices to the gods, a key component of everyday Hindu ritual that w ­ omen perform in their homes. The Ramayana and the Mahabharata w ­ ere vividly depicted in popu­lar serials aired on public tele­vi­ sion in the late 1980s, and the episodes that focused on Sita and Draupadi, the two self-­sacrificing female protagonists, ­were some of the most widely debated and discussed (Mankekar 1999). Reflecting ­these canonical w ­ oman self-­sacrificers, secular depictions of w ­ omen placing o­ thers before themselves are normal fare in con­temporary popu­lar media as well. For example, I regularly came across newspaper articles celebrating Bollywood actresses who explic­itly (and very publicly) placed ­family responsibilities ahead of their ­careers. Two such articles ­were published within days of each other in October  2011  in the Hindustan Times, one of India’s largest-­circulating national newspapers. One was titled “Marriage Is My First Priority”; the second was “I Am Not Ambitious” (Hindustan Times, October 9 and 12, 2011). The former article quoted actress Shilpa Shetty saying that she missed her work ­after

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leaving her acting ­career (Indian actresses often retire for a time postmarriage) but that she had “learnt to prioritize ­things” and “obviously” placed her marriage first. This headline ran alongside a photo of Shetty projecting an internationally appealing ideal of beauty—­thin, wearing revealing Western-­style clothes, hair long and unbound, light-­skinned, looking directly at the camera. Although ­women like Shetty proj­ect a modern, Westernized persona through their appearance, they si­mul­ta­neously make efforts to proj­ect conservative life choices that their Indian ­women fans may identify with, such as “obviously” prioritizing marriage over one’s ­career or declaring oneself “not ambitious.” The idea that w ­ omen should prioritize the care of ­others over themselves is, of course, not unique to India; in many parts of the world, ­women occupy self-­ sacrificial roles. The ste­reo­type of the Jewish-­American m ­ other in the United States evokes an excessively loving, self-­sacrificial nurturer who leverages ­these sacrifices to instill guilt and obedience in her ­children. The kind of self-­sacrifice that exists in North India is distinct, however—­first, ­because of the way it becomes implicated in nationalist and religious discourses; second, b­ ecause of the way it plays out in everyday ­family dynamics as an index of a ­woman’s propriety; and third, ­because the primary recipients of ­women’s care are not just their own ­children, but also often their parents-­in-­law. ­These domestic-­care roles have par­tic­u­lar implications for ­women with diabetes ­because the disease demands high levels of self-­care.

Domestic Modernity and Diabetes It might seem illogical for ­women with diabetes, like Rita, to conform to this self-­ sacrificial ideal, especially if it comes at the expense of their own wellbeing. According to social theorist Pierre Bourdieu, ­people’s actions are guided by implicit social biases that are “inscribed in the most apparently insignificant aspects of the t­ hings, situations, and practices of everyday life” (1991, 51). Collectively called “habitus,” ­these mundane practices of everyday life create inequalities that are deeply embedded in socie­ties, unconsciously reproduced by both the dominators and the dominated. ­People are so immersed in ­these omnipresent modes of being that it becomes difficult to even recognize them or to see that ­there are alternatives. Existing somewhere between complicit self-­oppression and freedom, habitus is comprised of unremarkable dispositions, preferences, and forms of knowledge that “function below the level of consciousness and language, beyond the reach of introspective scrutiny or control by the w ­ ill” (Bourdieu 1984, 466). The pervasive emphasis on w ­ omen’s self-­sacrifice in North Indian socie­ties might be considered a “habitus of self-­sacrifice” ­because most ­people subscribe to it with ­little conscious thought about ­doing so. The self-­sacrificial role is central to ideals of womanhood for all the reasons I just described: the incorporation of

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gendered domesticity into nationalist rhe­toric; religious texts and activities that position ­women as sacrificers; and popu­lar media repre­sen­ta­tions of desirable womanhood, to name a few. ­Women’s self-­sacrifice re-­inscribes gender-­based inequities in North India’s strongly patriarchal society, so it fits Bourdieu’s classic model of an oppressive system. Yet it also holds space for agency. Rita’s disability, and her consequent need to shift h­ ouse­hold responsibilities onto her ­daughter and husband, took away crucial opportunities for her to engage in self-­sacrifice and domestic ser­vice that are so central to the pativrata archetype. Instead, I believe, she enacted care in one of the only ways she could: by minimizing her own suffering so that her ­family would not have to hassle over her. This did not “work,” in the traditional sense of the word; that is, it did not actually minimize the impact of Rita’s suffering on her ­family, nor did it minimize the suffering itself. On the contrary, Rita’s health suffered terribly as a consequence of her self-­denial, but still she seemed unable to bring herself to ask for the help she needed. Nevertheless, self-­denial worked for Rita in other ways. Self-­sacrificial norms can be a power­ful source of cultural and social legitimacy b­ ecause they give w ­ omen leverage over their own—­and sometimes o­ thers’—­be­hav­iors in the domestic sphere (Nichter 1981; Pearson 1996; Snell-­Rood 2015a). Snell-­Rood writes of her female interlocutors in a Delhi slum, “Selfless work had the dual result of nurturing [­women’s] moral self and providing indirect communication to ­family members to change the terms of their care” (2015a, 59), essentially applying moral pressure on ­family members to maintain reliability and fidelity, and to reciprocally take care of the ­women who care for them. Likewise, by allowing herself to go uncared for, Rita ironically exercised a form of care for ­others and elicitation of care from ­others. This care equation allowed Rita to preserve some social standing within the ­family. As Radhakrishnan (2011, 51) notes, embodying “respectable femininity” is a way for w ­ omen to build their symbolic capital. Symbolic capital, like habitus, is a term borrowed from Bourdieu (1985, 1989). It refers to the social honor or prestige a person accumulates when ­others recognize their possession of three main types of capital, which Bourdieu defined as social, cultural, and economic in nature (1985). Bourdieu (1989) uses the example of a diploma: ­people universally recognize a diploma as a symbol of social worthiness (in other words, it is an object imbued with symbolic capital) ­because it implies education and achievement (it indexes social, cultural, and economic capital). Just as a diploma is a sign of social worthiness, the per­for­mance of self-­sacrifice provides a space of cultural legitimacy for w ­ omen’s participation in changing social forms, allowing them to perform ­family fidelity, and therefore to build symbolic capital. When diabetes is thrown into the mix, embodying the habitus of self-­sacrifice becomes even more complicated. This is b­ ecause diabetes demands a high level

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of self-­care, making it harder for ­women to focus exclusively on the care of ­others. The social value placed on ­women’s self-­sacrifice in North India means that when a w ­ oman develops diabetes, she is prob­ably already predisposed ­toward self-­sacrificing be­hav­iors. Like many other physicians in my study, Dr. Patel, a former head of diabetes care in two well-­known hospitals who had left t­ hose jobs to open a private practice, drew my attention to this self-­sacrifice. We had just had a long conversation about diabetes be­hav­iors among his female patents, and as I was getting up to leave, he said, “One other t­ hing which I have noticed in Indian w ­ omen is that they are very self-­sacrificing for the ­family.” I sat back down immediately. He continued, “It is an odd ­thing in Indian society: to suffer makes you ­great in your own eyes or something.” He could not count the number of times, he said, that he had seen w ­ omen skipping their medicines and hiding even acute symptoms from their husbands and c­hildren, and I agreed that this seemed to be a common pattern based on my experiences talking with w ­ omen like Rita from this chapter, Sita from chapter 3, and Maya from chapter 1. This is not simply a m ­ atter of personal pride—­“making you ­great in your own eyes,” in Dr. Patel’s words—­but also a m ­ atter of fulfilling deeply held expectations of what w ­ omen should do. The habitus of self-­sacrifice thus creates an impasse for many ­women with diabetes, who face criticism from their doctors and families if they do not perform adequate self-­care, while possibly facing social approbation, internalized guilt, and other forms of criticism from ­family if they become too involved in self-­care or if they cannot fulfill their normal duties. In the duty-­oriented cosmology represented by concepts like the pativrata, having strong needs for self-­care can imply a culturally incongruent self-­centeredness—­a lack of attention to one’s dharma, or life-­stage-­specific duties—­that moves dangerously close to a moral shortcoming. This is prob­ably one of the reasons why ­women felt so uncomfortable when I asked them about taking care of themselves: it is simply culturally inappropriate to talk about d­ oing so, at least among older generations, lest one come across as excessively self-­involved. Other scholars working among ­women in North India have noted that ­there is a distinct cultural de-­emphasis on most forms of verbal complaint specifically for ­women (Nichter 1981; Rashid 2007; Snell-­Rood 2015a), including complaints about health prob­lems (Das and Das 2004). Although w ­ omen’s physical health may suffer with diabetes, they build symbolic capital by being self-­sacrificial. Rita’s obvious self-­neglect, and her husband’s and ­daughter’s responses to it, could be read as self-­imposed oppression, but it could also be interpreted as a kind of invitation to enact care, and as a way of accruing some degree of symbolic capital. In this way, self-­sacrifice became embodied as poor physical and ­mental health for w ­ omen like Rita from this chapter, and Maya and Sita from earlier in the book.

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Self-­S acrifice and Patient Care: Physicians’ Perspectives Just as I did not set out in my research planning to study tension but arrived at the idea when ­others drew my attention to it, I also did not explic­itly set out to study ­women’s self-­sacrifice. The diabetes physicians, like Dr. Patel, ­were the first to point out how impor­tant addressing this concept was in the context of w ­ omen’s diabetes self-­care. During interviews with each of the physicians in whose clinics I worked, I asked about the general trends and obstacles they noticed in their female patients’ physical and ­mental health management. Self-­sacrifice came up almost ­every time. All but one of ­these physicians ­were men. Nevertheless, they ­were perceptive about the gender-­specific strug­gles that their ­women patients faced. For instance, when I asked Dr. Patel how his ­women patients ­were ­doing, he responded, “Most of them have lots of trou­ble. Females in Indian society, all said and done, are still ignoring their own selves ­because of ­family compulsions and male dominance. Of course, the scenario is changing, but that is only with the younger class. The [age] forty-­plus classes are still behaving the same, ignoring the females in the ­family, male-­centric.” Dr. Saxena, a cardiologist and diabetologist who had worked for over thirty years at one of India’s leading cardiac hospitals, said that ­women’s diabetes control is generally “still very far ­behind the gentlemen. Still!” he exclaimed, with a look of incredulity and a slap on his desk for emphasis, as if he could hardly believe that this pattern was continuing in 2011. “Most of the time, the reason is that this lady is a ­house­wife. She’s not working, so when she’s not working she’s d­ oing every­thing [at home]. So the attention that she gets is less, and the attention that she gives to herself is less.” In short, he finished, “They are not being looked a­ fter well, even by themselves.” Though doctors w ­ ere attuned to the effects of self-­sacrifice in their w ­ omen patients’ lives, they usually had trou­ble coming to grips with the idea that self-­ sacrifice was sufficiently impor­ tant that ­ women could—or ever should—­ prioritize it over their physical health. Granted, a diabetologist’s job is to look ­after their patients’ physical health. But by focusing on physical health alone, they often missed how impor­tant gendered social roles ­were to ­women. They seemed confounded when they saw ­women subordinating their own diabetes care to ­these social roles. Dr. Patel’s question from chapter 3 (“Why would a perfectly intelligent, aware, educated person not follow t­hings when [s]he knows that not following them is gonna harm [her]?”) is reasonable if physical health is the main priority, but it also suggests an unwillingness to take seriously the social imperatives that may be more impor­tant to ­women than physical health. The physicians’ diabetes-­management recommendations hewed very closely to international standards, which meant that even though they recognized their w ­ omen

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patients’ strug­gles with the recommendations, they rarely took culturally specific constraints into account when crafting diabetes-­management plans. Instead of thinking about adjusting diabetes-­management recommendations to accommodate gendered social ­factors, the doctors saw potential for improving w ­ omen’s health primarily through changing gendered norms. They stated, uniformly across e­ very discussion we had about the topic, that w ­ omen’s self-­sacrifice needed to be stopped if they w ­ ere ­going to attain better personal health. Although working outside the home brings its own stresses, many of the physicians felt that the key would be to get more w ­ omen involved in the paid workforce. Many said that their female patients with jobs outside the home fared better than their stay-­ at-­home counter­parts. Dr. Saxena explained: “­Because they are working, they ­don’t have to borrow money from their spouses. They are mobile; they have vehicles, so they can go to the hospital to have a test, laboratory. So they are more empowered.” As a result, he claimed, “­You’ve got business ladies, executive ladies, absolutely finely controlled.” Likewise, “The ­whole ­thing boils down to w ­ hether it’s a working lady or a h­ ouse­wife,” intoned Dr. Saxena, with another slap on his desk for emphasis. “Mostly in t­ hese families, the males are the head of the f­ amily and the earning member, so they have access to all the funds, while the funds kept aside for the lady are much less. . . . ​­There is an unwritten rule that the least money should be spent on her treatment.” Lit­er­a­ture on healthcare spending in India supports Dr. Saxena’s point, demonstrating that from infancy onward less money is spent on girls’ and ­women’s healthcare as compared to men’s (Pandey et  al. 2002; Ramakrishnan et  al. 2011). Dr.  Saxena explained how this comes about: “See, if she starts spending 5,000 or 6,000 rupees on ­every visit, it’s not liked. So she goes to a GP [general practitioner] who charges 50 rupees, and for 50 rupees she only gets a prescription. No counseling, no advice, no monitoring of the diet and exercise on ­every visit, and even the prescription is not backed by evidence-­based medicine. The GP w ­ ill just say, ‘[Take] sugar medicine, one morning, one eve­ning,’ b­ ecause he’s ­going to give her five minutes for his 50 rupees.” By not paying for specialized care, according to Dr. Saxena, families cut corners on their ­mothers’ and ­daughters’ health. This is not just true for the poorest families, who may have no other option than to cut corners, but also for middle-­ class families, who may have the ability to pay for specialized care but choose not to do so. Manpreet, the Sikh ­woman from chapter  4 who fought with her son and daughter-­in-­law over money, described exactly this. She claimed that the ­family had plenty of resources to pay for private medical care, but they got irritated whenever she asked for 1,000 rupees to cover the cost of transport to and from a private clinic where she could have gotten a detailed consultation. Instead, her husband and son would grudgingly give her only 500 rupees. “Five hundred rupees is nothing ­these days!” she exclaimed, and for this amount of money she could only afford to go to a charitable clinic where she had to wait for a long

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time, got a very rushed consultation, and sometimes did not even get to see the doctor. This seemed an injustice to her b­ ecause she watched her son and daughter-­ in-­law spend a lot of money on international vacations and lavish meals out. The physicians argued that financial freedom made it pos­si­ble for w ­ omen to care for themselves ­because it alleviated the pressure for them to be self-­sacrificing. Their vision looked something like this: ­Women who stay at home are immersed in domestic self-­sacrificial roles, financial de­pen­dency, and restrictions on their mobility. ­These circumstances create poor diabetes control and poor ­mental health, which feed into one another (see figure 5.1). According to the physicians, educated ­women who work outside the home have financial in­de­pen­dence. This translates into more active self-­care ­because when ­women have access to money, they w ­ ill presumably use it to pay for private physicians and medicines. This means they take better care of themselves, and as a result both their physical and ­mental health are better (see figure 5.2). ­There are a number of prob­lems with this comparison, however. First, this is a very class-­specific vision of what ­women’s work looks like in India. Dr. Saxena’s employed patients who ­were “absolutely finely controlled” ­were elite professional ­women, not t­ hose working in India’s massive informal sector as domestic servants, day laborers, and street-­food sellers. ­Those in salaried office jobs typically have much more g­ oing for them than just their workplace environments: they are wealthy and educated, so they have access to lifestyles, resources, and information that support diabetes management. In Bourdieu’s (1989) language, they have stores of economic capital coming from their high earnings, social capital coming from their social networks, cultural capital coming from their education, and symbolic capital as ­women at the vanguard of a new generation that successfully navigates India’s changing attitudes ­toward ­women’s salaried work. By contrast,

Immersion in domestic roles Work-at-home wife/mother

Poorer diabetes health

Financial dependency Poorer mental health

Restricted mobility

Figure 5.1

Education

Figure 5.2

Working outside home

Financial independence

Active healthcare seeking

Better physical and mental health

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t­ hose I knew who worked in the informal sector (like Sita, the orphaned domestic worker from Odisha) almost invariably had poor diabetes control; of the twenty-­ nine ­women with diabetes in my study who worked in the informal sector, I met only one with good diabetes control, and ­there was an obvious reason for this: she was a live-in maid in one of the diabetes physicians’ ­houses. Working, in short, did not guarantee that w ­ omen would have access to all the forms of capital that ­those in well-­paid professional positions have. Second, the w ­ omen who worked outside the home ­were by no means exempt from expectations around domestic self-­sacrifice. Instead, some scholars argue, ­women who are part of the emerging m ­ iddle class often experience the greatest pressure around self-­sacrifice ­because they are expected to be both domestic and modern, content at home when it is time to s­ ettle down and raise a ­family, yet outward-­looking and successfully employed at the same time (Basu 1998; Donner 2008; Fernandes 2006; Radhakrishnan 2011). For most of the ­women I knew in professional positions, moving into the paid workforce merely complicated role conflict around self-­sacrifice. In chapter 4, Manpreet’s daughter-­ in-­law was not responsible for the majority of domestic work in their ­house­hold ­because Manpreet was ­there to manage it, but this reallocation of ­labor practically tore the ­family apart ­because the ­women resented each other’s intrusion into their respective roles so much. Manpreet made it very clear that her daughter-­in-­law’s work outside the home was, and would forever remain, inappropriate in her eyes precisely b­ ecause it signaled a selfish refusal of domestic-­ care work. A third prob­lem with the physicians’ models of diabetes self-­care and work outside the home is one I already mentioned, but it bears repeating: it does not account for the symbolic capital that w ­ omen who work only inside the home accumulate through their domestic ser­vice. It assumes that being at home is categorically bad for ­women with diabetes, without acknowledging the incredible social importance of this role.

The Pativrata and the White-­Collar Worker In my study, t­ here ­were not many ­women who worked in professional positions—­ only 31 out of 280, or 11 ­percent. Ankita was one such ­woman. I first met her at the Delhi headquarters of a large international nonprofit organ­ization where I had some research contacts. A professional ­woman with multiple master’s degrees, Ankita was interested in my research ­because she had been diagnosed with diabetes two years prior. Before that, she had had gestational diabetes during pregnancy, and she knew this might put her at risk ­later on. I went to her office to interview her about her experience with diabetes. As we sat down at a futuristic wood and chrome t­ able, she ordered tea from the office assistant, who knew that it must be made without sugar for her.

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Ankita was forty-­two years old, and like most Indian ­women who can afford to do so, she wore gold jewelry: a chain, earrings, and many rings on her fin­gers. She had on a chic salwar kameez tailored in a modern, close-­fitting style but cut from traditional hand-­printed silk. She lacked many of the other markers of North Indian womanhood, such as a bindi (dot between the eyebrows), sindoor (a stripe of vermillion in the part of the hair worn by married ­women), sari, or nose ring. Instead, she wore glasses and had a bobbed hairstyle. This marked her aesthetically as both traditional and modern at once—­visibly and consciously domestically modern. Just as the diabetes doctors had suggested, the structured workday seemed to help Ankita maintain her strict diabetes diet. She packed her own food daily and ate specific items at specific times, as her dietician had instructed her to do. “I have ­things kind of chalked out, that I have to eat this right now and this right now,” she explained. However, beyond that benefit, the similarities to the physicians’ model ended t­ here. When Ankita started at this job seven months ago, her exercise fell by the wayside. “I try some breathing exercises, but still, the kind of exercise I would like to do [I c­ an’t]—­because when I had gestational diabetes I was, like, walking four kilo­meters ­every day, you know, just the perfect kind of lifestyle. But not now, ­because by the time I reach home it’s about seven thirty.” By this hour it was much too late to exercise, especially if she wanted to spend any time with her ten-­and six-­year-­old ­children, who would have been home for hours by the time she arrived. Ankita lived in a joint f­ amily with her parents-­in-­ law, who stayed home all day, and her husband ran his own consultation business, so ­there ­were plenty of other ­people to watch over the ­children in her absence. Still, she felt guilty that she did not spend more time with them. Discussions in India about the prob­lems of modernity often take place through the idiom of disintegration of the joint ­family (Cohen 2000; Donner 2008). ­Women like Ankita, who work outside the home, are usually the i­magined villains. One educated stay-­at-­home ­mother who chose not to work explained to me that for her, the choice to work seemed unforgivably selfish: “If one is working outside, it’s good for them, but it’s not good for the other ­family members.” Other ethnographers of India have documented how members of the younger generation are judged as “good” or “bad” based not on their personal achievements, but on the degree to which they perform appropriate care for elder f­ amily members (Cohen 2000; Vatuk 1990). ­Because w ­ omen have historically not worked outside the home in North India, the primary relationships that defined many w ­ omen’s identities ­were, and to some extent continue to be, ­family relationships. This can be both positive and negative. As Menon and Shweder (1998) note in their study of w ­ omen in Odisha, the home is considered a pure and sacred space, and for this reason homeboundedness does not necessarily have negative connotations for w ­ omen in North India (see also Wiser et al. 2001). Yet the social vigilance, lack of privacy, and domestic

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workload associated with the ­family can also be oppressive, especially if the ­woman in question desires to work, spend money, or move outside the home in ways that challenge the joint f­ amily’s instated norms (Krishnan et al. 2010; Liddle and Joshi 1989; Radhakrishnan 2011). In such cases conflict may arise, as it did for Manpreet’s daughter-­in-­law from chapter 4, and for Ankita. Ankita struck me as someone who was not simply tired out, but tired of life altogether. She seemed to be having a lot of trou­ble coping with the stress of her new job. When I asked how her health was in general, she said, “Not so good. Stress, work stress. . . . ​The work pressure ­here is enough to . . .” she let the sentence trail off as she shook her head. She told me how she battled city traffic to drive herself from the suburbs into work ­every day (an unusual skill for ­women in Delhi). She felt torn between ­family and ­career, and remarked, “I always feel sleep deprived, that’s all.” She coped with t­ hese multiple responsibilities in creative ways, such as directing her maid about what to cook over the phone, but many t­ hings simply did not get done, including her exercise routine. She did what she could to take care of herself at work, and this was mostly centered on food and medi­cation management, b­ ecause exercise was out of the question. For Ankita, working outside the home seemed to make diabetes control more, not less, difficult. Although her diet control seemed to be working—­when I checked her blood sugar and glycated hemoglobin, they ­were so low that they resembled the levels of someone without diabetes—­Ankita’s everyday quality of life was not good. She reported debilitating physical and ­mental health symptoms, such as body and joint pain, lack of energy, and major mood swings. She attributed t­ hese to the stresses of being a working m ­ other. Unlike the vast majority of ­women in this study, she used the En­glish word depression to talk about distress. “Mood swings, oh God! . . . ​ The sudden burst of anger is very intense [since getting diabetes]. Irritated? It’s the feeling of depression that comes on. That’s part of the depression, that feeling of depression.” Despite her good blood sugar control, Ankita’s distress symptoms ­were high, suggesting she might be suffering from both clinical depression and anxiety. Her C-­reactive protein levels ­were very high at 7.3 mg/L, and her Epstein-­ Barr virus antibodies w ­ ere some of the highest in my study. ­These indicated that her chronic stress was taking a significant toll on her health. Although this had not yet started to show in her diabetes management, the biomarkers suggested that she was at very high risk for complications like cardiovascular disease down the line. Ankita’s life outside work had also become limited. Once, Ankita told me, she deci­ded she would stop at a market on her way home from work to run some errands—­a ­simple enough task. “And it was such a disaster. So that’s—­I deci­ded just never do that,” she said, with an uncomfortable chuckle, never specifying exactly what had happened but intimating that it had profoundly thrown her off. She had given up having h­ ouse­guests, too, ­because it tired her to such an extent

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that it would take multiple days to recover afterward. “Sometimes you do feel trapped,” she conceded, “but I ­don’t know. Every­body feels that way sometimes. When ­things are ­going fine, it’s like every­thing is nice and well, but the moment you are—­you feel trapped, somewhat. Anyways, that’s part of . . .” This pattern of allowing emotionally charged sentences to trail off left me with the distinct impression that Ankita was leaving unsaid much more than she was saying. The exhaustion in her eyes said it for her. On the surface of it all, the doctors w ­ ere right that Ankita, a working w ­ oman, had good diabetes management. This might be the main ­thing they would notice if she consulted one of them. But her narrated story and her blood biomarkers suggested a dif­fer­ent real­ity: she was tired all the time, in pain, and the chronic stresses of her multiple roles w ­ ere putting her at risk of major diseases l­ ater in life. Ankita was one of the most socially and po­liti­cally progressive ­women with whom I worked, and ­there ­were three other adults in her ­family to manage the ­house­hold when she was away. Yet she was not exempt from the imperatives of domestic responsibility and self-­sacrifice to which most of the ­women in my study gave their full time. Ankita’s description of her everyday life reflected strug­gles that ­career ­women likely face all over the world, but especially in urban India. Whereas the doctors acknowledged that working comes with its own stresses, they tended to underestimate the stress associated with the efforts to balance self-­sacrificial ­house­hold and parenting roles, work roles, and diabetes self-­care.

Embodied Self-­S acrifice and Diabetes Suffering On a very basic level, the prob­lem for both Rita and Ankita was this: t­ here is a fundamental clash between cultural norms that emphasize the care of ­others, and the intensive self-­care required to manage a chronic disease like diabetes. This conflict showed up all the time in ­women’s lives, and it had real implications for their health and wellbeing. Some of ­these implications ­were positive. ­Others ­were not. ­Women in India tend to delay seeking treatment ­until their health reaches a crisis state, and this was true of many ­women in my study (Conrad and Pacquiao 2005; Kielmann 2002). Rita from the beginning of this chapter was a particularly obvious one, as was Sita, the domestic worker from chapter 4 who did not go to the doctor ­until she was so sick that she could not function. Maya, the young ­widow from chapter 1, also displayed self-­sacrificing tendencies that portended a worrisome ­future for her health. Noting how surprised ­people ­were to learn that she had developed prediabetes at such a young age, she attributed the onset of the illness to the trauma of her husband’s death. Her prediabetes thus functioned as an embodied mark of that trauma, and of the trauma that followed a­ fter his death ­because of her unkind in-­laws. The lack of active care-­seeking in each of ­these ­women’s lives is, I think, both a product and an expression of the habitus of self-­sacrifice. Most of the doctors

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with whom I worked characterized this self-­sacrifice as frivolous and short-­sighted martyrdom. I have been arguing ­here, however, that it cannot be dismissed so easily ­because it does impor­tant cultural work. Rita and Ankita (and many o­ thers like them) lacked access, for vari­ous reasons, to domestic roles that legitimated their status as “good w ­ omen.” Being self-­effacing about her health needs was one of the few ways Rita could demonstrate self-­sacrifice in the domestic sphere. Ankita, too, prioritized the happiness of her ­family even at the expense of her own ­mental health. Physicians often talked about how w ­ omen’s health got placed last in the list of ­family priorities, and they understandably disapproved of this situation b­ ecause it meant that ­women endured suffering that could have been prevented, or at least attenuated. But ­going through that suffering also did impor­tant ­things for t­ hese ­women; when self-­sacrifice becomes embodied through poor diabetes control, diabetes health crises become linked to an expression of moral righ­teousness. Taken from this perspective, poor health does not simply reflect negative ­qualities; it can also function as an embodied signal of desirable qualities like appropriate femininity and self-­sacrifice. Although ­women in my study did not intentionally sabotage their own health in a bid to appear virtuous, t­ here do appear to be cultural incentives associated with embodying the image of the w ­ oman who is so busy caring for her ­family that she cannot be bothered to dwell on her own physical or m ­ ental health. The fact that this role exists in shared cultural understandings of what w ­ omen should do or how w ­ omen should be paves the way for ­women to slip into a self-­sacrificing role without the explicit intention of d­ oing so. For some w ­ omen, poor health came to serve as an index of womanly morality.

Food and Eating as a Case Study in Self-­S acrifice The preparation and consumption of food can be an especially complicated ground for the push and pull of self-­care and self-­sacrifice ­because food preparation involves the symbolic and physical care of o­ thers. Food preparation is in many ways the most crucial domestic task for women-­as-­homemakers ­because in North India, food is loaded with symbolism surrounding the f­ amily’s caste, financial status, and regional identity (Donner 2008; Liddle and Joshi 1989; Smith 1990; Solomon 2016). But food is much more than just a marker of group identity and corporate unity. It is also a site of intervention—­typically the first site of intervention—­when diabetes is diagnosed. Diabetic dietary modifications force ­women to confront and potentially subvert the moral (and financial) economy of their ­family, religious, and caste groups through changes to food habits. As Solomon points out, food is one of several routes through which the forces of modernity enter the physical body, blurring bound­aries between body and environment and, in the pro­cess, creating a pathologized metabolism that includes obesity and diabetes (2016; see also Wiedman 2010, 2012).

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­Because of its ability to confer purity or pollution, food preparation and consumption was both a practical and a spiritual ­matter among the predominantly Hindu ­women with whom I worked. Hindu scripture is full of references to food and food preparation, and it sketches out a well-­defined ritual role for w ­ omen as the man­ag­ers, preparers, and servers of foods according to elaborate practices intended to augment their purity ( Jamison 1996; Khare 2004). In this conception, food is not simply nourishment to keep the body-­machine ­going, but also is a “uniter” that creates what Indian anthropologist Ravindra Khare refers to as “food-­body-­soul-­cosmos relationships” (2004, 412). Khare explains, for instance, how the cooking medium used for a regular food item like rice (­either ­water, oil, or ghee/clarified butter), the cooking method (frying or boiling), and its place in the sequence of cooking determine the relative ritual purity of this everyday staple and thus shapes when, by whom, and how it should be eaten. Although ­women do not usually observe all of ­these intricacies on an everyday basis, they nevertheless constitute a “known quantity” and can become especially impor­tant at festival and fasting times (Khare 2004). ­These multiple registers of meaning make food quite central to the f­ amily’s social, hierarchical, and religious life (Donner 2008; Khare 2004; Solomon 2016). Food is also a direct expression of domestic care, and its preparation was one of the most impor­tant and time-­consuming ­things ­women did on an everyday basis. They bought fresh vegetables ­every day from neighborhood vendors, which they prepared, served, and cleaned up three times daily, including preparing multiple dishes at both lunch and dinner. This usually meant getting up earlier than every­one ­else and working long a­ fter ­others in the f­ amily had begun winding down their days’ activities. In my work, strug­gles around food ­were gender specific not only in the preparation (which was invariably done by w ­ omen), but also in terms of whose food needs took pre­ce­dence. ­Women almost always made food according to the tastes of the se­nior man in the ­family. Dr. Sharma (the only ­woman diabetologist with whom I worked) explained her female patients’ conundrum about food this way: “If the man has diabetes, the ­whole ­family changes. If the ­woman has diabetes, nobody changes except her. The husband is certainly not g­ oing to change,” she said, scoffing a ­little at the ridiculousness of this proposition. “The ­woman is not ­going to cook a separate meal for herself. You know, you cook for the w ­ hole ­family, and then you should say, ‘I’ve gotta cook something dif­fer­ent for me.’ It’s just not pos­si­ble.” Even if ­women had the time to cook separate food for themselves in the midst of t­ hese time-­consuming cooking routines (and many said they did not), they almost always made food in a way that conformed to f­ amily identity and preference, rather than to their diabetic requirements. Even ­those who hired domestic servants to help with ­house­hold work often maintained control of the cooking in part or in w ­ hole. Having at least one part-­ time domestic servant is a marker of ­middle classness in North India and was a

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very common practice among ­those in my study (Ray and Qayum 2009). But ­there are strict social hierarchies between domestic employers and servants, and the line was often drawn at food preparation, as if to prevent excessive familiarity between employer and employee. This was both a point of personal pride—­after all, who knows the ­family’s tastes and preferences better than the lady of the household?—­and likely also motivated by concerns over ritual purity and the polluting nature of food prepared by a person of lower caste. Food preparation was also something many w ­ omen held onto as a way to keep a hand in the domestic sphere while still working outside the home. Ankita’s situation was like this. She worked outside the home but participated in the preparation of the tiffins (packed lunches) for her ­children before she left each morning, and during the day she gave careful instructions by phone to her maid about what food to prepare and how to prepare it. Another ­woman in my study, a college professor, explained, “­There’s a full-­time maid, but food I do myself. I have one son and one ­daughter, son is in eleventh, and ­daughter is in seventh. I get up at five thirty, send my ­children to school, I make the tiffins. [The maid] helps me out, but I make the tiffins, send them to school, and make the breakfast for every­body, myself and my husband, cook the lunch, and then I leave by nine. So it’s not as if I am just resting on my laurels. ­There is a lot to be done.” ­There is indeed a lot to be done. In two of the private clinics where I worked, I shared a consultation room with the staff dietician. This gave me many opportunities to observe dietary counseling for diabetes. Typically, they recommended the following detailed regimen. In the morning ­people should avoid drinking tea on an empty stomach, and instead have two low-­sugar biscuits (lightly sweetened cookies made of wheat flour) with their chai (black tea with milk). The chai should be made unsweetened, or sweetened artificially with aspartame tablets. For breakfast, they should have some oat porridge, wheat flakes, muesli, or dalia (cream of wheat, but it must be prepared without the usual sugar). They should avoid fried breads, such as parathas, which are a common breakfast food. At eleven, they should have a small piece of fruit, but not banana, mango, or lychees, which are too sugary and starchy. For lunch, between one o­ ’clock and two thirty, they should start with fresh salad made of tomatoes and cucumbers with no dressing, then have two rotis (whole-­wheat dry-­roasted flatbreads) prepared with extra bran. ­These ­were to be eaten with a dry-­cooked vegetable curry (not a “gravy” dish with a rich sauce). This dish could not have potatoes, which are a common ingredient in the vegetable curries of North India. Along with this w ­ omen could have a cup of dal (lentil soup) and some plain yogurt. At this point, w ­ omen would often complain that they missed rice, which most ­people eat along with dal and vegetables. The dieticians might concede that they could have some, but no more than two tablespoons, and no more than once a day. Between four ­o’clock and five thirty, ­women ­were allowed another cup of sugarless chai with a healthy snack, such as plain crackers, peanuts, or kala channa chaat, a fresh salad of sprouted chickpeas

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with diced onions, tomatoes, and cucumbers. ­Women ­were instructed to eat another plain vegetable salad at around six or six thirty, then to eat a light dinner between eight and eight thirty of dry-­cooked vegetables, perhaps with grated paneer (farmer’s cheese) sprinkled on top for a bit of extra flavor, only one roti, and no rice if they had had it for lunch. Before bed, they w ­ ere allowed to eat half a piece of fruit such as an apple, or a cup of milk as long as no sugar was added to it. The goal was to eat eight small meals throughout the day. The dieticians also uniformly instructed ­people to go for a brisk daily walk lasting at least forty-­five minutes. Most w ­ omen who came for t­ hese consultations listened patiently and attentively to the dietician, but they ­were understandably intimidated by the elaborateness and the restrictiveness of the regimen. ­There w ­ ere plenty of reasons why this dietary regimen did not work for ­people. For some, it was repugnant b­ ecause it meant they would have to eat on a schedule that did not match that of the rest of their ­family. The refrain “we eat together” was a common defense when ­women explained why they could not make special foods for themselves, and it resonates with the lit­er­a­ture suggesting the importance of commensal eating in Indian families (Khare 2004). “What [the dietician] told me to do, I could never do it,” explained one older w ­ oman. “She told me to take this at nine [­o’clock], this at twelve, one biscuit h­ ere, now have a bread piece. I ­can’t eat anything alone; even if it’s sitting ­there with me, I ­won’t even taste it if I’m alone. I know I s­ houldn’t do this, but this has been my habit all my life.” When I asked one ­woman if she was ­doing anything dif­fer­ent with her diet, she responded, “In a joint f­ amily, one ­can’t make special food separately for oneself. I eat together with the rest of the f­ amily. If I put two potatoes in the vegetable dish, then surely I’ll have at least three or four pieces on my plate.” For ­others, the main obstacle to the diabetic diet was their attachment to comfort foods, especially starchy staples. “Without potatoes I never feel full,” said one ­woman. “­We’re from UP [Uttar Pradesh, the neighboring state], so we have a habit of eating potatoes. So I need aloo sabji [potato dishes]. The doctor tells me I c­ an’t have them, but I c­ an’t do it.” Another man, who had a particularly sharp sense of humor, protested only half-­jokingly in En­glish to the dietician, “I have lived all my life with aloo [potatoes]! I w ­ on’t do this. I ­can’t change this. My grand­mother used to say ­there is no meal without aloo! . . . ​With this [diet] you can prescribe some antidepressant capsules. Strong ones, ­because I’ll get depressed on this diet.” White rice was another staple that many said they had trou­ble giving up, including Rita, whose husband accused her of hiding herself in the pantry and gorging herself on it. As Solomon (2016) notes, in the early 2000s large food conglomerates in India began producing lower-­glycemic-­index rice when market research suggested that rice was the one food p­ eople with diabetes missed the most. At the time of my research, the alternative rice was available but quite expensive compared to regular rice and therefore inaccessible to all but the wealthy.

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Fi­nally, for some, the diabetic diet was untenable ­because of cost. Dietary concerns are an arena where class, disease, and treatment intersect and are reinforced. The most impoverished ­women with whom I worked often received no dietary counseling whatsoever, but t­ here was a small group at the public hospital that took part in a diet-­counseling class attached to a research proj­ect the medical residents w ­ ere carry­ing out. “We only can afford to eat twice a day at the most, and even this is a big deal. I cook dal and vegetables. But what to do? I ­can’t do the dietary control that the doctor has advised,” complained one poor w ­ oman from the dietary education class. “Sometimes I am forced to eat potatoes. Milk has gotten so expensive; it’s 40 rupees. I c­ an’t afford fruits; w ­ e’re poor.” Many of ­these individuals ­were so preoccupied about having enough food that they could not afford to be very par­tic­u­lar about the content of that food. To conclude, w ­ omen food preparers must have intimate knowledge about individual f­ amily members’ preferences, religious knowledge about the proper preparation of food according to ­family tradition and caste group, financial bud­geting skills, and individual creative skill. To insist on food changes for an entire f­ amily when a ­woman needs to eat foods that are considered unpalatable or undesirable would be a culturally inappropriate imposition of her ­will over ­others. This could interrupt ­family hierarchies, moral economies, and patterns of care to such an extent that most middle-­and lower-­class ­women viewed it as downright impossible. Food is one of the first sites of intervention when a person is diagnosed with diabetes, but it was often also one of the last ­things that ­women in my study felt able to change, given the larger corporate needs that contribute to a f­ amily’s dietary patterns. “That [separate food] is the biggest challenge in a regular middle-­class ­family,” Dr. Gupta concluded. I had to agree with him.

You ­C an’t Come between Us Anymore, Diabetes! The idea that diabetes might come between a ­woman and her domestic duties is clear in a diabetes-­educational pamphlet from the Bayer com­pany that I picked up one day in a doctor’s office. It advertised the same blood glucose monitor I used in my study. “You c­ an’t come between us anymore, diabetes!” read the title, overlaid on a picture of a ­woman gazing lovingly at her husband, who smiled directly at the camera as he offered her a flower. She was clothed in a sari; he wore Western-­style business clothes. It was unclear from the picture which member of the ­couple had diabetes, but the implication that the illness can disrupt domestic bliss was front and center. For many ­women with diabetes, the threat of the illness interfering with domestic life was very real, and ­women enacted domesticity in ways that involved complex denials and reversals of their own suffering. The ­women with whom I worked ­were attempting to negotiate self-­care in a context where selflessness is the norm. Grounded in historic relations between nationalism, caste, gender, and f­ amily; Hindu notions of domestic morality; and

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popu­lar repre­sen­ta­tions of ideal womanhood, the cultural norm of ­women’s self-­ sacrifice is deeply entrenched in North India. ­Women in India may aspire to new aesthetic standards and ideas about work and productivity that have emerged since the 1990s, but they are still expected to maintain what many describe as the “traditional” obligations to ­family and home. This ethos exists in­de­pen­dently of diabetes, but when a w ­ oman has diabetes, self-­sacrificial norms become a site of logistical, social, and moral conflict ­because diabetes amplifies the amount of self-­ care ­women are supposed to do. It is telling that I met many ­women who more or less skipped over self-­care in ­favor of the care of ­others, but I never once met a person who had done the opposite—­given up on the care of ­others in ­favor of self-­care. In the moral calculus of self versus other, ­others invariably won. Po­liti­cal leaders have strategically evoked this habitus of self-­sacrifice to instill national pride and purpose in ­women’s domestic work. Po­liti­cal propaganda during India’s in­de­pen­dence movement portrayed domestic self-­sacrifice as a crucial f­amily value that would move India forward into a sparkling i­magined modernity, one f­amily at a time. Th ­ ese days, popu­lar media often portray self-­ sacrifice as a modern pursuit, but it gains a sense of historic and cultural gravitas from its roots in the ancient Hindu texts. From a biomedical perspective, a habitus of self-­sacrifice is disastrous b­ ecause it gets in the way of ­women’s self-­care. The diabetes physicians in my study ­were ­eager to find ways of educating ­women out of this behavioral pattern. This assumption that culture change must take place before ­women can be liberated to take care of themselves appears in many studies on ­women, health, and autonomy in India (Conrad and Pacquiao 2005; Roy and Chaudhuri 2008). One of my goals in this chapter was to demonstrate that self-­sacrifice is not likely to go away anytime soon ­because it does crucial moral and social work for ­women in North India. Being selfless is perhaps one of the most basic indicators of moral standing for w ­ omen ­because it is linked directly to their ability to care for large extended families. When a w ­ oman gets sick and experiences major life disruptions, denial of her suffering may be one of only a few routes available to her to demonstrate morality through self-­sacrifice. From Rita’s perspective, “sparing” her ­family members the trou­ble of getting her medicines and taking her to the doctor constituted an act of care, albeit one that had dire consequences for her health. Then again, self-­sacrifice (especially in a context where it is a highly valued virtue) is not always entirely selfless; it serves impor­tant moral and social ends for ­women, too. Rita’s denial of her own needs was also in some ways self-­serving ­because it exerted a form of moral management over her ­family. By demanding her f­ amily’s attention in the name of rejecting it, by requiring her f­ amily to “read” her as she became more inscrutable, Rita’s be­hav­ior forced her husband and ­children to respond in some way to her suffering (Das 1997; Sarah Pinto, pers. comm. 2016). Thus, in self-­sacrifice like Rita’s, ­there may be deep agency: cultivation

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of symbolic capital in an economy of care where agency happens across persons, rather than in one person in confrontation with another person (Sarah Pinto, pers. comm. 2016). Manjot, the wealthy w ­ idow in chapter 3, enacted something similar with her forceful complaints about her uncontrollable diabetes despite her best efforts, and in her intimation that she might be suicidal. Both w ­ omen seemed to be seeking and indirectly soliciting a caring response. It might not m ­ atter that the f­ amily’s response was often negative, as when Rita’s husband and ­daughter criticized her for being irresponsible about her health and creating extra work for them, or when Manjot’s d­ aughter accused her of eating the wrong foods. Instead, what might ­matter most is that Rita and Manjot engaged in self-­sacrifice and that their families acknowledged this, thus restoring some of the moral agency they lost when they became ill. For many ­women, the greatest threat from diabetes is not physical health complications that might ensue from the disease, but rather the loss of social legitimacy that comes with e­ ither being forced to prioritize one’s own care over the ­family’s, or being forced to give up some of one’s domestic caretaking roles, or both. Rita’s and Ankita’s strug­gles reflect ­these social dangers, neither of which is tenable u­ nder domestic modernity.

6 • RESILIENCE Living Well with Diabetes

Leaning t­ oward me as if she w ­ ere about to divulge a precious secret, Sudesh remarked, “I’ll tell you one ­thing: actually, I ­don’t take anything too personally. My mind is a ­little dif­fer­ent [from other ­people’s]. What’s happened has happened; it makes no difference to me.” She was explaining to me why her diabetes ­didn’t bother her. Above the whir of the evaporative cooler, she continued, “­People complain, ‘Oh, I’m ill, I’m this, I’m that.’ ” Sudesh was sure that this was why her Sikh neighbor, who also had diabetes, was so sick all the time. “­There are several ­people in the neighborhood who have sugar, like the Sardar’s1 wife. She sits around brooding about her illness and acting so sick, just sitting t­ here quietly. I’m not like this; I can go any place.” In a context where ­women are socialized to care for ­others, diabetes self-­care is challenging. Yet some p­ eople are able to fold diabetes in with the rest of their lives, and Sudesh was one of them. This chapter is about understanding how and when ­women live well with diabetes. ­Here I explore what allows some ­women to thrive, as if diabetes w ­ ere no big deal at all, even though o­ thers become so overwhelmed with the disease that it dismantles their lives. Like Sudesh, ­those who lived well with diabetes had access to something—­social support, a positive attitude, or perhaps money—­that allowed them to cope with their illness. For Sudesh, concerted positive thinking was a key aspect of her coping with diabetes. “It’s your thinking that makes your body feel sick,” she explained. “It’s all in the mind. Like, three days ago I had a fever. I d­ idn’t have the strength even to get up, but I took some medicine and felt a ­little better, so I washed the dishes, did the laundry, and did the sweeping and mopping. I keep myself active.” This mind-­over-­matter mentality also applied to Sudesh’s diabetes care. “If I get some time, I go to the park at six [­o’clock]. I take ­water along ­because I get thirsty. I’ll take five or six rounds in the park, then sit beneath a neem tree and eat some of its leaves. Then I get up again, and come back and do the ­house­work.” Sudesh’s life was by no means perfect. Originally from India’s poorest state, Bihar, Sudesh was married at eigh­teen and migrated with her new husband to 121

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Delhi soon ­after. Now thirty-­five years old, Sudesh was Baniya, a subgroup of the Jat agricultural caste with a reputation in Delhi for being shrewd social climbers who might gain economic and po­liti­cal power, but who lacked social sophistication. When we met, both her own and her husband’s families still lived in Bihar, where they supported themselves by farming and ­running a phar­ma­ceu­ti­cal supply business. Sudesh had three c­ hildren, but one had been institutionalized for some kind of bad be­hav­ior that she pointedly avoided discussing with me. Her ­family had money prob­lems, and ­because nearly all of her and her husband’s relatives ­were in Bihar, they had comparatively ­little social support in Delhi. Sudesh’s life, in short, was not without its stresses. Sudesh’s diabetes diagnosis came at the end of an especially stressful year when her husband had been forced to leave his sales job b­ ecause of a severe case of dengue fever. Around this time Sudesh started noticing skin irritation, pain, and itching on her legs and feet (common symptoms of diabetes), which propelled her in to the doctor for a diagnosis. She attributed the onset of her diabetes to the tension she endured about her husband’s health, and to the loss of their only source of income. “He only had like 10,000 plates [blood platelets], and the doctor said that it would be very hard to save him.” When I first met her at the clinic, she had been diagnosed just a month prior, and she was struggling a lot with the dietary changes and the side effects of the diabetes medi­cations that her doctor had prescribed. She was acutely feeling the losses associated with maintaining compliance to her diabetes regimen. “I ­can’t eat anything, so I get sad,” she complained. “Sadness happens, ­doesn’t it? ­Because I loved sweets, and now I’ve had to cut them out completely.” Her medicines w ­ ere giving her a sour stomach, and she was feeling awful. I initially asked her if she would be willing to do a follow-up interview with me, ­because most of the ­women in my study had been diagnosed years before I met them, and I wanted to know what a postdiagnosis adjustment period might look like. Given what a hard time she was having on the day we met, I assumed I would find her worse off several months down the road. Five months ­later, when I arrived at Sudesh’s small apartment a­ fter wandering through a warren of dark alleys too narrow for cars, I found something very dif­ fer­ent. In the time since we had last met, her husband had gotten a job briefly as a traveling mobile-­phone salesman but was once again unemployed. He had been forced to leave the new job b­ ecause his continuing body pain from dengue made it impossible for him to drive around the city on a motorcycle. I figured this would have added to her stress about diabetes. When I remarked that the situation must be hard for her, she disagreed. He was about to open a shop of his own, so she was hopeful. Besides, she said, “Money is always coming and g­ oing, but the main ­thing for us is that their ­father [her husband] almost died [from dengue]. So now I have more tension about his life than about money. ­W hether ­there’s money or not is a small ­thing. Life is more precious.”

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What a profound insight, I thought, wondering if I would have had the clarity to adjust my priorities this way if I had been in her position. Sudesh had adapted equally well to her diabetes, and as I learned more about her I realized that this adaptability was a large part of her personality. Sudesh told me about how shortly ­after we first met, she had stopped taking her “En­glish medicines” (by which she meant allopathic medicines) and had switched over entirely to Ayurvedic treatment. ­These treatments ­were agreeing with her body, mind, knowledge base, and pocket­book, and she was very happy about it. “En­glish medicines are harmful for me,” she explained. “I get stomach burning from them; ­they’re too hot.” She passed me a plastic jar of Ayurvedic powder that she took daily instead. It was made of neem leaves (from a tree in the mahogany ­family), karela (­bitter gourd), jamun (a tree fruit), and several other herbal ingredients I could not identify. Moreover, she had figured out how to navigate a program at a private hospital that offered ­free treatment for low-­income patients, including this Ayurvedic medi­cation, through its complementary and alternative medicine department. In addition to its lack of side effects, Sudesh liked this approach to diabetes management b­ ecause it made sense to her, and she felt that she understood enough about it to direct her own care. “I try to take care of myself with what­ever herbal medicine knowledge I have. I take it according to my own desires. I take the ­things that I know about. I watch the Care-­One [health] channel [on TV].” Although Sudesh did not monitor her blood sugar at home, she said she could tell that it stayed in control. At five months into her treatment, she had no disability whatsoever (“I can go any place”) and felt that she had made a fantastic recovery from her initial symptoms. Explaining her logic—­which I found unassailable—­she said, “This [Ayurvedic] medicine suits me, so why should I needlessly take En­glish medicines too?” Sudesh had also acclimatized quickly to the lifestyle changes required for diabetes management. Although she said she still missed sweets sometimes, she no longer ate them at all and had even entirely stopped drinking chai ­because she did not like it without sugar. “I’ve developed a habit now,” she said, when I reminded her that she had been having a lot of trou­ble with this when we first met. She admitted that she had been eating mangoes lately—it was the height of  the much-­anticipated mango season—­but she ate very ­little rice and few potatoes. Sudesh was remarkably resilient. Even in the few months between the time I first met her and my follow-up visit to her ­house, she had fallen on hard times twice: first, with her diabetes diagnosis, and second, with her husband’s job loss. ­There w ­ ere also the longer-­term strug­gles of being poor, having a child with apparently serious behavioral issues, and almost losing her husband to dengue. Her ability to avoid what I would have considered a normal distress response was almost uncanny to me. Perhaps, I thought, she was simply putting on a brave face

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in front of me, a complete stranger. But remarkably, Sudesh reported almost no symptoms of clinical depression or anxiety. Her high glycated hemoglobin (9.8 ­percent) suggested that her blood sugar was not ­under very good control, but her relatively normal C-­reactive protein and Epstein-­Barr virus antibodies indicated that this poor diabetes control was not yet compromising her long-­term cardiovascular health and that her generalized stress was low. It certainly was not interfering in her everyday life. She was a g­ reat example of someone who was truly living well with her diabetes, as long as we are willing to entertain a version of “living well” that is not hemmed in by the bound­aries of biomedical control. Exploring how ­women live well with diabetes, as I do in this chapter, involves questioning what “living well” with diabetes means. W ­ omen like Ankita (chapter 5), who maintained strict diabetes control at her demanding job but reported poor quality of life, might be “living well” by their doctors’ standards, but not by their own. ­Women like Sudesh, on the other hand, managed their diabetes in ways that the biomedical doctors in my study did not recognize as valid, but nevertheless they seemed to be contently living life on their own terms. ­Others (but very few) managed to do both at once, living with diabetes control their doctors approved of, and still maintaining the lifestyles they desired. Examining ­these scenarios side by side is significant for transforming what resilience looks like in diabetes, and what should be the criteria we use to identify successful living with a chronic disease.

Resilience in Diabetes This chapter is grounded in the assumption that we can learn as much about diabetes from ­people who are ­doing well as we can from ­people who are not. The term resilience is most often used to describe the hard-­to-­pin-­down qualities that allow ­people like Sudesh to thrive in spite of adversity, and it has received a lot of attention in psy­chol­ogy and other health-­related social sciences in the last two de­cades (Bonanno 2004; Masten 2001; Ryff and Singer 1998). B ­ ecause resilience appears to be teachable and can have real effects on a person’s quality of life, the concept has even made its way into popu­lar psy­chol­ogy and self-­help books, the best known of which are prob­ably Malcolm Gladwell’s Outliers (2011) and Angela Duckworth’s Grit (2016), both New York Times bestsellers that examine how some ­people manage to excel where ­others do not. In the academic lit­er­a­ture, resilience has been described as a “self-­righting mechanism” (Werner and Smith 1992, 202) that all p­ eople possess to some degree. One’s level of resilience depends on personal and environmental characteristics, including t­ hings like optimism, self-­esteem, humor, communication skills, planning skills, and good memory; social support from ­family and peers; and other stressful events that a person might or might not have experienced in their life (Richardson and Waite 2002; Werner and Smith 1992).

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In everyday life, psychologists describe resilience as a variable response to stressful events. Richardson and colleagues’ (1990) “resilience pro­cess model” suggests that ­people generally maintain a state of emotional and functional homeostasis, which gets disrupted by stressful life events (Ryff and Singer 1998). Following a disruption, p­ eople reintegrate into life through one of several routes: (1) individuals may recover resiliently, having gained new knowledge, self-­ understanding, or increased strength of resilient qualities, and return to a state of wellbeing at least as high as their original level; (2) they may recover from the disruption, but only return to previous levels of wellbeing without having gained anything; (3) they may recover from the disruption but with loss of motivation or hope; or (4) they may recover with dysfunction, using self-­destructive be­hav­ iors such as substance misuse to cope with the challenge (Richardson et al. 1990). Sudesh, whose story opened this chapter, was someone who on several occasions seemed to have recovered resiliently. For instance, the insight she gained a­ fter her husband nearly died that life was more precious than money allowed her to cope with the other stresses in her life, including money prob­lems and her diabetes. Resilience ­matters for wellbeing among ­people with diabetes, but it does not always translate to better physical health outcomes. A large body of research links resilience with better health among nondiabetic groups (Bandura 1977; Marshall 1991; Wallston, Wallston, and DeVellis 1978; Wallston 1992), and among p­ eople with diabetes (Bradshaw et al. 2007; Celano et al. 2013; Perfect and Jaramillo 2012; Peyrot and Rubin 1994; Schlenk and Hart 1984; Steinhardt et al. 2009; Venkataraman et al. 2011; Yi et al. 2008). Collectively, ­these studies agree that ­those who believe they have control over their diabetes, and who have higher self-­esteem, generally do more self-­care activities like taking their medicines, checking their blood sugar, exercising, and getting regular checkups. They disagree, however, on ­whether or not increased resilient qualities actually produce more favorable diabetes health outcomes, such as lower glycated hemoglobin. This improvement in quality of life, but not necessarily in blood sugar control, was evident among the most resilient ­women in my study too. Although Sudesh certainly exhibited a resilient attitude, for instance by adjusting rapidly to the new dietary requirements of her diabetes, her blood sugar was not well controlled by biomedical standards. Sometimes certain aspects of resilience—­such as self-­mastery—­are associated with better diabetes control, and ­others—­such as optimism—­are not (Perfect and Jaramillo 2012). Sometimes, lower glycated hemoglobin is associated with resilience (Perfect and Jaramillo 2012; Yi et al. 2008); at other times, it is not (Bradshaw, Richardson, and Kulkarni 2007; Bradshaw et al. 2007). A training program for p­ eople with diabetes in the United States focused on increasing resilient qualities; it did improve p­ eople’s self-­reported quality of life and levels of physical activity, but it did not improve their blood sugar control as mea­sured by glycated hemoglobin, nor did it result in loss of body fat among the overweight study group (Bradshaw et al. 2007).

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Most of the ­women with diabetes in my study had poor blood sugar control (70 ­percent of them, to be exact), but it did not interfere with the rest of their lives to the extent that we might expect. This fact, I argue in this chapter, is a signature of a par­tic­u­lar kind of resilience that was common among the w ­ omen with whom I worked. I am not the first health researcher to suggest that resilience can be found in cases in which ­people report high levels of symptoms but low levels of interference in everyday life (see, for instance, Karoly and Ruehlman 2006). The ability to function despite exposure to stressful circumstances or internal distress is, in fact, one way of defining the concept of resilience in the first place, as Karoly and Ruehlman point out. I argue that Sudesh’s case constitutes an example of what one might call “alternative resilience” ­because she had poor diabetes control by standard biomedical mea­sures, but maintained good m ­ ental health and overall daily function anyway. Although biomedicine might dismiss ­these as “noncompliant” cases who ­will suffer diabetes complications ­later in life (which may be true), the fact that many ­women with diabetes go through this stage of quiescence at some point, and may in fact remain in it for years, suggests that it deserves full consideration as a legitimate part of many ­people’s illness experience. If ­there is one lesson to take from the psychological lit­er­a­ture on resilience, it is that “being resilient” can mean many t­ hings. The standard resilience model is not sufficiently dimensional to account for the fact that ­things can be helpful for some aspects of wellbeing while si­mul­ta­neously being harmful for ­others, but the abstract idea of resilience is flexible enough to accommodate varied manifestations of “toughness” in the face of adversity. The vari­ous forms that resilience might take are the focus of the rest of the chapter.

Alternative Resilience Krishna leaned back on her overstuffed couch as she explained to me that she was diagnosed with diabetes when she complained of severe leg pain more than a de­cade ago—­one of the most common complaints among w ­ omen in my study, and (as I noted earlier) likely a result of damage to the peripheral nerves from years of exposure to blood carry­ing too much sugar. She was diagnosed with diabetes at forty-­five, but even now, at fifty-­five, Krishna had never been particularly bothered by her illness. That day, Krishna was wearing a mustard-­colored salwar kameez with red embroidery, and metal bangles that cut into her plump wrists. She was obese, and she had already developed both hypertension and diabetes. Krishna and her husband lived in a joint ­family with their adult son, his wife, and their grand­son in a pleasant upper-­middle-­class neighborhood of South Delhi. A deeply religious Hindu ­woman, she did pooja (worship) twice daily at home and regularly attended kirtan (religious singing) at her local ­temple. Her faith seemed to mitigate concerns about health. “I d­ on’t have any tension, my mind is

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f­ ree!” she said, when I asked her about tension in her life. She elaborated, “God has given birth to us and written our fate, so we have to live through it. No one ­else can do it for us. If illness is written on our body, then we have to suffer it. This is why I’m never afraid that I have sugar or BP [hypertension]. When we have to die, we have to die.” This idea that suffering is an inherent part of life is something that Lewis (2014) has also observed among Tibetan Buddhist refugees in India. Although theirs is an entirely dif­fer­ent situation than Krishna’s, ­there is a close relationship between Hindu and Buddhist ideas about the value of suffering as an unavoidable aspect of life and a way of accruing spiritual merit. This attitude allows Tibetans to remain resilient in the face of remarkable ­trials associated with the Chinese genocide, including torture, starvation, and fleeing on foot over the Himalayas to Nepal and India. Krishna, too, was drawing on this idea when she said that what­ever is written in our fate, “we have to suffer it.” For Krishna, ac­cep­ tance that suffering is part of one’s fate was freeing. Krishna also had a relaxed attitude ­toward her diabetes medi­cations. Her doctor had told her to take her oral medi­cations three times a day. She started feeling shaky and dizzy when she did this, though, so one day she “deci­ded to take them according to my own wishes.” Now, she said, “I’m only taking it twice. I take the morning one, then I take the midday one in the eve­ning. My sugar is coming out totally fine now. The doctor is away ­these days, so I ­haven’t told him, but I’ve started feeling better since ­doing this.” Krishna adhered only partially to a diabetic diet. She attended one of the monthly ­free health camps, so she had received just the basic diabetes dietary guidelines: avoid sweets, fruits, and high-­fat foods. Her daughter-­in-­law, who did most of the ­house­hold cooking, had also taken note of the guidelines, and she was worried by Krishna’s refusal to reduce the oil in the ­family’s diet. They had a very amicable relationship, but this disagreement about food led to a rather heated argument between the two during my visit to their home. “I try to make as many ­things as pos­si­ble boiled or with less oil,” explained the daughter-­in-­law to me. “­Mummy,” she said, turning t­ oward her mother-­in-­law with a solicitous tone, “­there’s a lot of oil in our food at this h­ ouse­hold. We d­ on’t eat as much at my parents’ place. I ­don’t like it, how much oil we add. Oil makes your sugar go up, no?” Krishna smiled and said to me, with hands spread in a gesture of helplessness, “I d­ on’t eat that many vegetables anyway. I just eat a ­little bit of what­ever is made. We d­ on’t add so much oil that the vegetables float around in it, just according to our preference.” But her daughter-­in-­law insisted, “If we made it with less oil, it would be better. I mean, a lot—” “Hey,” interrupted Krishna, cutting her off, “if we make our vegetables totally dry, then it seems like ­there’s nothing in it. Look, we d­ on’t put extra ghee [clarified butter] on top. Just once in a while if someone makes me parathas [fried flatbread] in the morning ­they’ll put a ­little light ghee on them.” At this point she turned ­toward me and said, in a tone of mock exasperation, “­These ­people ­don’t

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give me food!” She gestured accusingly t­ oward her daughter-­in-­law with an open hand. “They give me just the right amount to eat, and they tell me that I s­ houldn’t put too much oil in the vegetables. Eesh! Every­one says I put too much oil in the vegetables.” Her daughter-­in-­law smiled, but shook her head and rolled her eyes at the same time. For Krishna, as for many ­women in my study, diabetes was not her first priority. Instead, religious devotion was the key t­ hing that structured her everyday life. She got up at six ­every morning to prepare her husband’s tea, but she delayed her own breakfast u­ ntil nine, a­ fter her morning pooja was complete, b­ ecause one is supposed to worship before eating. This created a daily period where she was at high risk of low blood sugar, and her doctor did not like it. Moreover, although her doctor instructed her not to eat sweets and most fruits, Krishna confided, “I ­won’t lie—­I go to ­temple, so I’ll eat a ­little prasad.” Prasad is the word for devotional offerings that p­ eople pres­ent to deities when they go to t­ emple to pray, which usually consist of fruits or Indian sweets. Once the prasad has been blessed and received by the t­ emple priest on behalf of the deity, devotees are given small portions of it to ingest the blessings. When Krishna went to ­temple, she ate bits of fruits and sweets as part of her worship, even though her doctor had told her ­these foods ­were not good for her. Her doctor did not like this e­ ither. And worst of all from her doctor’s perspective, like many Hindu ­women, Krishna observed religious fasts. During the upcoming Navratri (nine nights) festival, for instance, she told me that she was planning to eat only fasting foods during the day, such as fruit and fried potatoes, and only take her diabetes medicines at night when the fast ended and she could eat what she wanted. Although this too put her at risk of low blood sugar, she had never experienced a prob­lem with fasts. “I stay totally fit, I’m telling you the truth. My body feels as light as a flower. Lord Durga allows me to keep the fast. If she d­ idn’t want me to, she would make it impossible for me.” Anyway, she concluded, “It’s all in God’s hands. We ­can’t do anything.” I could understand why Krishna’s doctor was so disapproving, but what complicated m ­ atters was the fact that religious devotion seemed to be a crucial source of resilience and fulfillment for Krishna. How can we make sense of a trait or be­hav­ior—in this case, religious devotion—­that on the one hand appears to directly oppose biomedical recommendations around diabetes, yet on the other hand provides invaluable daily structure, life meaning, and comfort?

Hybrid Self-­C are: Retooling Biomedical Models Although they differed in terms of age, duration of diabetes, and socioeconomic status, Sudesh and Krishna exhibited a form of alternative resilience that I saw in more than half the ­women with diabetes in my study. This consisted of a surprising combination of poor blood sugar control but ­little physical disability and good ­mental health. Part of what made Sudesh and Krishna resilient was their ability

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to function well, both physically and psychologically, despite having poor blood sugar control. Their situation mirrors the findings of some resiliency studies among ­people with diabetes in the United States, which demonstrate that interventions specifically designed to increase a person’s resiliency training may be good for ­mental health among p­ eople with diabetes but do not necessarily produce better blood sugar control (e.g., Bradshaw, Richardson, and Kulkarni 2007; Bradshaw et al. 2007). In other words, increased resilience seems to be good for improving ­mental wellbeing and reducing stress in p­ eople with diabetes, even though it does not necessarily change anything about their physical health. Sudesh and Krishna each had access to par­tic­u­lar sources of psychological strength that they described as crucial to their understandings of the world. For Sudesh, this was her refusal to “take anything too personally” in life, and the new perspective she gained in the wake of her husband’s illness: the realization that their money trou­bles (and other similar concerns) ­were, as she put it, “a small ­thing” compared to the catastrophe they would have endured had he died. For Krishna, it was her strong faith and daily worship that kept her mind “totally ­free” of worries, including worries about her diabetes and hypertension. Although it is a biological fact that ­people with diabetes ­will eventually develop physical complications if their blood sugar remains uncontrolled, the time it takes for complications to set in varies widely between individuals and depends on a multitude of f­ actors, only some of which are understood. ­These include contingencies such as how long a person had diabetes before being diagnosed, and how their blood sugar fluctuates postdiagnosis. At the time we met, both Sudesh and Krishna had blood sugar that was not meeting biomedical cutoffs for “good” diabetes control, but both insisted that it did not interfere with their lives at all. Sudesh had only been diagnosed with diabetes six months prior, so most physicians would prob­ably look at her case and conclude that complications simply have not had time to develop yet. Krishna, however, had remained f­ ree of complications for a full de­cade, with no severe symptoms. In both of t­ hese ­women’s narratives of diabetes, ­there is the idea that ­mental power can overcome physical illness. This aligns with Ayurvedic medical understandings in North India that keeping a “cool” mind though positive thinking, meditation, and prayer can correct the “hotness” of many illnesses (Ecks 2014). Sudesh’s and Krishna’s carefree attitudes ­toward life w ­ ere part of what allowed them to respond to stress effectively, and they accord to a large extent with the concept of the mind being able to control the wellbeing of the body. Dr. Usman, the Unani doctor from chapter 4, also subscribed to this attitude with his philosophy of personal discipline, positive thinking, and mindful living as the way to treat tension and chronic diseases. But Sudesh and Krishna ­were not just absorbing and reflecting cultural and medical values around them. They also actively worked to balance their quality of life against their physical health, negotiating, as anthropologist Steve Ferzacca

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(2000) phrases it, “a tolerable pres­ent” against the distant possibility of “an ideal ­future.” Chris Feudtner, the critical medical historian I mentioned in chapter 1, describes this balancing act as “the chronically ill patient’s archetypal dilemma: how to reconcile the pursuit of control over a disease with the pursuit of living well with that disease” (2003, 212). Every­one with whom I worked was engaged in some degree of tradeoff between a tolerable pres­ent and a f­ uture with pos­si­ble illness. Sudesh and Krishna adapted their lives to their diabetes and their diabetes to their lives, compromising a l­ ittle on each side. This is in contrast to many accounts of the lived experience of diabetes, in which ­people describe feeling controlled by the illness, as Manjot did in chapter 3 when she complained that she could not get hold of her blood sugar (see also Broom and Whittaker 2003; Naemaritch and Manderson 2006). ­Others felt guilty when they failed to adhere to medical diabetes-­management routines (Ferzacca 2000), or infantilized by the discourses of “being bad” by “cheating” on diabetes management (Broom and Whittaker 2003). Sudesh and Krishna made efforts to change their habits ­after getting diabetes, but both also altered their doctors’ prescriptions to meet their own needs. It was not that they ­were entirely unfazed by their illnesses; they both made explicit efforts to manage it, and Krishna’s complaint “Eesh! Th ­ ese p­ eople ­don’t give me food!” suggested that she did feel the burden of her diabetes management. Yet neither one let the impositions dictate their be­hav­iors. Each ate foods that she had been told not to, Sudesh as a way to enjoy the short mango season, and Krishna as part of her religious practice. Each also altered her medi­cations as she saw fit; Krishna took less medicine than her doctor instructed her to do, whereas Sudesh had completely stopped the biomedical treatment she had first turned to ­after getting diabetes. She now took Ayurvedic treatment exclusively, and even altered this according to her own knowledge and what she learned on TV. Fi­nally, Krishna ignored the warning that p­ eople with diabetes should not participate in religious fasts, reporting instead that she thrived during fasts with the support of the goddess Durga. As part of their modified approaches to diabetes, each ­woman also chose an alternative rubric for monitoring her blood sugar. Instead of using a glucometer at home, a cornerstone of biomedical diabetes management but one to which neither ­woman had access, each judged the appropriateness of her food and medi­cation routines by her body’s response to them. ­After substituting Ayurvedic medicines for allopathic ones, Sudesh no longer had stomach prob­lems. Krishna no longer felt dizzy ­after changing the quantity and timing of her medi­cations. The method of monitoring they chose—­how they felt physically—is intuitive and experience-­near, not technocratic or removed from their own bodies, as standard blood glucose monitoring can often be. Diabetes physicians often caution their patients that relying on this kind of bodily self-­assessment is danger-

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ous ­because it is impossible to detect changes in blood sugar ­unless they are extreme (especially the highs), but given that practically every­one in my study was in a similar situation to Sudesh’s and Krishna’s, I wondered what other method their doctors expected them to use. The illness experiences of p­ eople like Sudesh and Krishna w ­ ere so remarkably dif­fer­ent from ­those of ­others, like Manjot from chapter 3, that it was almost as if they had dif­fer­ent diseases. This made me won­der to what extent their diseases might, in fact, be dif­fer­ent if they switched places. If Manjot had been as carefree as Sudesh, able to sweep her prob­lems to the side and not worry so much about her diabetes control, would her physical and m ­ ental health have been better? Conversely, if Sudesh had had a glucometer and had been worried about her blood sugar control all the time, would she have been as content with life as she was? One way to think about Sudesh’s and Krishna’s alternative forms of resilience is to employ the distinction often used in medical anthropology between “disease” and “illness” (Helman 1981; Kleinman 1988a). A disease is the technical dysfunction that a physician has been trained to diagnose using observable symptoms, whereas illness is the totality of how a sick person and his or her social network “perceive, live with, and respond to symptoms and disability” (Kleinman 1988a, 3). In other words, disease is the biological malfunction, and illness includes the social consequences of that malfunction, including such ­things as changes in one’s identity and personal relationships, activities, work, and vis­i­ble bodily changes that might alter how ­others interact with the ill person. Together, ­these concepts help explain how two ­people with the same physical symptoms might have very dif­fer­ent illness experiences, depending on f­ actors like their social networks, the type and quality of medical care they receive, their social and economic positions, and attributes of their own personalities. Sudesh and Krishna, and every­one ­else with diabetes in my study, had the same disease. But they did not all have the same illness. In fact, one might claim that although Sudesh and Krishna had the disease of diabetes, they did not have the illness at all—­the loss of social roles or the disability that often accompanies diabetes and other chronic diseases. They ­were each certainly aware that they had diabetes, but they did not “act diabetic”; ­there appeared to be few functional consequences to their diabetes. As Sudesh explained, “sickness is all in the mind. . . . ​ I keep myself active.” This raises impor­tant theoretical questions about what diabetes ­really is: The physiology or the experience? Biological or social? Along with this, when we are treating diabetes, do we treat the disease or the illness? Can we ever ­really treat one without also treating the other? The distinction between disease and illness also raises impor­tant practical questions about the mutual effects of physiology and experience on one another. Sudesh’s and Krishna’s symptoms of “disease” w ­ ere mild. Sudesh had some lingering skin prob­lems that ­were pres­ent at the time of her diagnosis, and Krishna sometimes felt dizzy or fatigued if she ate lunch ­later than usual. Although ­these

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symptoms might give them legitimate reason to adopt the sick role I discussed in chapter 3, or a temporary socially sanctioned exemption from regular responsibilities (Parsons 1951), Sudesh and Krishna rejected this role by refusing to allow their symptoms to impinge on their activities. Sudesh’s insistence on getting up and ­doing ­house­work on a day when she was ­running a fever, for instance, was an outright rejection of the sick role. Although the long-­term physical prognosis may be poor for Sudesh and Krishna if their blood sugar remains uncontrolled, their “social prognosis” is good, and might to some extent attenuate the physical complications we would expect from long-­term uncontrolled blood glucose. And Sudesh and Krishna might have been onto something with their belief that positive thinking could shape their physiology. One potential route through which positive thinking and social integration might protect health is the hypothalamic-­pituitary-­adrenal (HPA) axis, the endocrine pathway responsible for the body’s “fight-­or-­flight” response. Stress hormones involved in this pathway, like adrenaline, block the activity of insulin. And of course, a lack of insulin functionality is the physiological signature of type 2 diabetes. As I discussed in chapter 4, when a person is constantly stressed, insulin sensitivity decreases and immune function is up-­regulated, and it is thought that this “weathering” of the body’s systems is one of the primary ways in which stress is linked to the onset of chronic diseases like diabetes (Geronimus et al. 2006; Juster, McEwen, and Lupien 2010; McEwen 1998; McEwen and Seeman 1999). It therefore follows that situations of lower stress, like the lives of Sudesh and Krishna, would mean less activation of the HPA axis, and therefore perhaps more normal insulin functioning (Bjorntorp, Holm, and Rosmond 1999; Bjorntorp 2001; Golden 2007; Kiecolt-­Glaser and Glaser 2002; Knol et al. 2006). W ­ hether or not t­ hese effects are strong enough to actually mitigate diabetic complications among p­ eople who already have diabetes is unknown, but it is a fascinating and likely at least a partial explanation for the observation that around the world, happier ­people live better and longer. Some might argue that Sudesh and Krishna w ­ ere taking unnecessary risks with their health by modifying their diabetes-­management routines. ­Others might consider ­these rational choices. Biomedicine has made tremendous advances that now give ­people with diabetes the ability to live a relatively normal life where once ­there was none. As I have suggested at vari­ous points throughout the book, we cannot simply dismiss biomedicine as a crucial player in diabetes ­because the illness as we know it (that is, as a chronic disease that ­people can live with instead of die from) is a product of biomedical intervention. But this medical advance comes with a heavy burden: the intensive work involved in maintaining constant vigilance over one’s blood sugar control, the constant worry about potential complications, and the moral judgments associated with not maintaining control. This work and worry is also a form of suffering, replacing the more immediate physical suffering that a person with diabetes would experience without biomed-

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ical treatment (Feudtner 2003). In light of the heavy tradeoffs associated with maintaining optimal blood sugar control, it is not surprising that p­ eople like Sudesh and Krishna felt ambivalent about adhering to an intensive biomedical diabetes regimen, and sometimes prioritized their pres­ent quality of life over an abstract and indefinite set of pos­si­ble ­future complications. The choices they made might not be the most medically sound from their doctors’ perspectives, but Sudesh and Krishna applied considerable ingenuity to make their diabetes-­care routines work for them. The fact that Sudesh, Krishna, and many o­ thers like them lived well with diabetes for long periods of time, despite their lack of biomedical compliance, left me wondering what the ultimate goal of medical treatment for diabetes should be. If the goal is perfectly controlled blood sugar, then Sudesh and Krishna ­were failing, as ­were nearly 70 ­percent of the ­women with diabetes in my study. If, however, the goal is to maintain the best pos­ si­ble quality of life with the disease, then they w ­ ere succeeding quite well, thanks in large part to the modifications they made on their own to their prescribed management routines.

Classic Resilience: Two ­W omen’s Experiences As I have already described, the w ­ omen in my study who maintained optimal blood sugar control w ­ ere few. Only about 23 ­percent (42 ­women out of the total of 184 with diabetes) ­were able to do this, and even fewer, 14 ­percent (25 ­women), ­were able to do so without elevated symptoms of depression or anxiety. This small minority represents the elusive “ideal” situation that most diabetes physicians seek to promote: good diabetes control and good m ­ ental health at the same time. The scarcity of such ­women in my study underscores the difficulty of achieving biomedical standards of good diabetes care and a good quality of life at the same time. Indu, the ­woman with the single son from chapter 3, was one such individual, and below I introduce two ­others, Sarita and Nirmala. Sarita: Privileged Management Sarita’s combination of jeans, a red kurti (short tunic), shoulder-­length salt-­and-­ pepper hair, and cat-­eye glasses marked her as a worldly, cosmopolitan w ­ oman. The wife of a retired official of the government intelligence agency, Sarita had long been accustomed to rubbing shoulders with India’s elite and spoke fluent En­glish. Although she once worked as a schoolteacher, she gave up her job years ago when her husband’s work took them abroad for long periods. Now that they ­were both retired, Sarita, age sixty-­three, described herself as a “lady of leisure.” Her maid served her tea in bed e­ very morning while she read the newspaper. In retirement, her husband had become a columnist who published regularly in India’s largest circulating newspaper. Their h­ ouse in a wealthy suburb was filled

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with photo­graphs of their two c­ hildren and four grandchildren, who all lived abroad. Their life was generally low stress and happy. Sarita reported not a single symptom of clinical depression or anxiety, which was quite unusual in my study. Sarita injected insulin daily for her diabetes. She was conscientious about her blood sugar management, eating “mostly continental food” (non-­Indian food) for dinner, such as broth-­based soups and sandwiches, which she felt ­were healthy choices ­because they ­were lighter than Indian food. Remarkably, she said that she had never experienced an acute episode of low or high blood sugar in her fourteen years with the illness. She took regular walks, regulated her diet, and made sure she ate and took her medi­cations on a regular schedule. Partially, she learned this approach by watching a relative with diabetes who suffered terribly. “[My husband]’s aunt used to be diabetic, and her blood sugar used to go up to 500 then come down to 20. She was careless like that, and she went into diabetic coma a ­couple of times,” explained Sarita. “Her grandkids used to come back from school at two thirty, so she waited to have lunch with them at three. What nonsense!” she exclaimed, shaking her head. “I mean, I ­wouldn’t. You have to be sensible! You can sit with your kids, but the gap between breakfast and lunch becomes too long [if you wait to eat with them].” When I first met her, it seemed that Sarita had no trou­bles against which she would need to exercise “resilience”: she was wealthy, was in good health, and had a loving f­ amily who remained close even though they w ­ ere geo­graph­i­cally spread out. She had so many friends that she had gotten tired of trying to keep up with them all socially. It was a charmed life. Yet, during the few months between our initial meeting at the clinic and my follow-up visit to her home, Sarita’s ­family went through a serious crisis that threatened to destroy not only her good diabetes management, but her entire lifestyle. A ­ fter what she called a “hectic week of partying” with their friends, Sarita’s husband was having a per­sis­tent upset stomach, so they went to the nearby private hospital for a consultation. Routine tests revealed some minor arterial blockage, but the doctor thought it might be somehow related to his stomach prob­lems and treated it very aggressively. According to her, the unnecessary stents and arterial puncturing that the doctor performed caused so much internal bleeding that her husband went into cardiac shock, multiple organ failure, and nearly died. He remained in the hospital on life support for over two months, during which it was unclear if he would survive, or if he might have suffered severe brain damage from this trauma. This crisis in an other­wise smooth life shook Sarita, but she recovered from it quickly and, at least by her telling, was able to step back and view it coolly, even as it was ­going on. “I did have two big bouts of self-­pity and crying—­I have to admit that the tears came. Not self-­pity, I think; frustration. But I think it was legitimate to feel sorry for myself also,” she said, thoughtfully. Part of her ability to cope, Sarita said, came from her supportive friends and ­family. Her ­children and other relatives visited more than once from their homes abroad and called e­ very

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day to check in. ­People called so frequently, in fact, that she eventually stopped answering the phone. “All I told them was, ‘Pray for [my husband]. Pray for me. Pray for us.’ And all of their collective prayers worked!” she said, with palpable joy. Now that their lives ­were returning to normal, Sarita could hardly believe that they had been through such an ordeal and come away more or less unscathed. “It was a very tough time, a very tough time, but you can see I am smiling again. I took him to see a movie yesterday, and t­ oday I am taking him out for lunch.” H ­ ere was resilience in action, I thought. Sarita was proud of the way she had conducted herself during this time of upheaval, and she did not mind saying so. “I had some palpitations . . . ​but I was standing, and my diabetes was ­under control. I’m the first one to faint, but in all this two and a half months, I’m so proud of myself—­I ­didn’t faint, and I ate well ­because I felt that I needed to conserve my energy, I needed to feel strong. So instead of somebody telling me [to take care of myself], I took the pains to do it myself,” she explained. Once, during the early part of her husband’s hospitalization, Sarita noticed her blood sugar readings ­going up and called her diabetologist, Dr. Sharma, who instructed her to increase her insulin dosage. ­Toward the end of her husband’s hospitalization, Sarita went for a diabetes checkup, and Dr. Sharma was shocked that her glycated hemoglobin was only 6.9, showing that her blood sugar had remained u­ nder control throughout the f­amily crisis. Sarita claimed that her fortitude during this time was born of necessity. “­People tell me, ‘You w ­ ere so brave, you w ­ ere so brave!’ And I say to them, ‘Did I have a choice?’ ” Nirmala: Stability in Adversity A striking ­woman with precisely groomed eyebrows separated by a small red bindi and a long braid trailing down the back of her pink salwar kameez, Nirmala was a Delhi native who moved to a neighborhood of drab government-­housing blocks ­after her arranged marriage at twenty-­one to a low-­ranking civil servant. She was now forty years old, and she had been diagnosed with diabetes four years before. Their small, dark, ground-­floor apartment had peeling paint and ­water stains on the concrete walls. Nirmala explained in Hindi that she did all of the h­ ouse­hold work, cooking, and cleaning for her nuclear ­family. Her three ­children ­were at school most of the day and her husband was at work, so she spent much of her time alone in this rather bleak dwelling. Nirmala had been taking her d­ aughter to after-­school tuition sessions for years, and she was d­ oing every­thing she could now to learn about the vari­ous courses of study her ­daughter could pursue when she started college the following year. I could tell she was preoccupied with this; before even getting to the interview we spent a long time talking about what kinds of ­career options would be available to her ­daughter if she got a degree in the social sciences, like me, rather than the biological sciences, a much more common stream of study in North India.

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Nirmala was diagnosed with diabetes during a prolonged period of stress ­after her husband’s work transferred him away from Delhi to the mountain town of Shimla for nearly ten years. During that entire time Nirmala remained alone with their three young c­ hildren in Delhi, as the sole caretaker for the h­ ouse­hold. The situation was especially difficult, she explained, ­because her husband was unsupportive. “When I had my young c­ hildren and my husband was in Shimla, I needed emotional support but he ­didn’t give it to me. He said, ‘The ­whole world stays alone, so what’s the prob­lem?’ So I got ­really irritated. . . . ​Other ­people appreciate how I managed all alone, but instead of showing me some emotional support he just harshly said this to me, that every­one stays alone.” Their marital conflicts, which ­were still g­ oing on when I met her, began during that period. Nirmala believed that her diagnosis with diabetes was the direct result of “that tension, tension, tension, maybe. I was alone; I had to manage every­thing alone.” Nirmala fell into what she called a deep “depression” (using the En­glish word). “I had a lot of tension at that time, but now I’m feeling better. In t­ hose days when I was ­really depressed, then I felt [suicidal],” she explained. Nirmala still reported tension in her daily life, primarily due to ongoing marital discord and the worries she had mentioned earlier about her c­ hildren’s education. However, she clearly distinguished ­those worries from her depression of previous years and reported no clinically significant depression or anxiety symptoms when I asked her about them. She was aware of some lingering depressive tendencies and tried to cope with them proactively. “At times I still feel sort of depressed. When that happens I d­ on’t feel like g­ oing out. But when I feel depression, I make an effort to go out and see a good friend; then I feel fresh. . . . ​I try to make a change. I read a book or visit my parents.” Nirmala’s stress biomarkers indicated no elevated body inflammation (as mea­sured by C-­reactive protein), although she did have a very high immune-­system load (Epstein-­Barr virus antibodies). This could have been the result of a recent infection or common cold that Nirmala had not told me about, but it more likely reflected chronic stress accumulated over the years of marital discord and diabetes. Having grown up watching her ­father suffer with diabetes, Nirmala was initially very worried when she was diagnosed. “I saw that my papa had kidney prob­lems ­because of diabetes, and since I got it at such a young age I felt scared that such ­things might happen to me too.” But Nirmala kept her blood sugar in very good control, with a glycated hemoglobin of 7.1 ­percent. Moreover, unlike most other ­women in this study, she did so with no help from anyone in her ­family or any domestic servant. Laughing, she recalled how when she was diagnosed, her doctor recommended she hire an extra domestic servant to reduce the stress in her life. “But I had no maid at all. They told me I should get a ­little extra help, but I ­didn’t have any in the first place! . . . ​And I was thinking, ‘Let alone two, I d­ on’t have even one! They must think that b­ ecause I came to this big hospital I am so rich.’ ” Even ­after her husband’s return to Delhi and her several years with the ill-

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ness, Nirmala said, he “­doesn’t compromise all that much on food.” Instead, she adapted. When her ­family requested foods that ­were prohibited for her, such as poori (fried bread), she made them but did not eat them. Shrugging slightly when I asked if this was hard, she responded, reminding me of Sudesh, “No, it has become a habit.” She also went on regular walks with ­women in her neighborhood—­ “and that also for my own m ­ ental satisfaction” as much as for her health. She estimated that about half of her female friends had diabetes. She had regular checkups and said she has educated herself about her blood tests. Nirmala thought about her diabetes, but she described it as a peripheral concern in her life compared with other worries, such as her ­daughter’s impending transition to college.

Resilience and Biomedical Authority Sarita and Nirmala w ­ ere best-­case scenarios from the biomedical perspective. Both had gone through hard times, but each had emerged more or less victorious in terms of her physical and m ­ ental health, and her broader life satisfaction. ­People like them are the ­imagined “gold standard” against which doctors mea­sure the success of their diabetes patients. Good blood sugar for Sarita and Nirmala served as a kind of biomedically sanctioned “evidence” of resilience. Poor blood sugar acted as an obstacle despite which w ­ omen like Sudesh and Krishna ­were resilient, and for this reason their resilience was not recognized as valid in biomedical models. I do not believe that ­either form of resilience is more deserving of recognition than the other. However, I often asked myself what allowed ­women like Sarita and Nirmala to adhere to this extremely demanding biomedical standard despite significant adversity. No doubt structural ­factors helped them both, such as having ­family or friends to rely on during hard times, being relatively financially stable, and having an education, which prob­ably facilitated each ­woman’s ability to interpret her diabetes-­ management instructions and engage in preventative care. Yet t­ here is more to the story; personal characteristics specific to each w ­ oman also prob­ably contributed to their resilience. Both w ­ omen evinced a hard-­to-­define trait that within the resilience and health-­psychology lit­er­a­ture has been called “self-­efficacy” (Bandura 1977), “health locus of control” (Wallston, Wallston, and DeVellis 1978; Wallston 1992), and “self-­mastery” (Marshall 1991). This trait involves both a desire and an ability to take care of oneself, which according to the psy­chol­ogy lit­er­a­ture are grounded in internal motivation and a strong sense of self-­worth. Motivation can come from many sources, but Sarita and Nirmala had a few ­things in common. First, both w ­ omen talked explic­itly about how they ­were motivated by their responsibilities to ­others and a desire to remain capable of fulfilling them. Nirmala in par­tic­u­lar, in defending herself against her husband’s unfeeling response to her strug­gles, was almost defiant in her assertion of self-­ worth. “I’ve started being more firm,” she explained. “Like, ‘I need to go ­here or

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t­here.’ Before, I [listened to my husband and] felt that I had done something wrong. I never went out to get t­ hings for myself, and I had no time. My c­ hildren ­were so small, and I c­ ouldn’t go out anywhere with them, even to the market. If I was invited to a function, I had to take care of the c­ hildren the w ­ hole time and ­couldn’t enjoy it. He never did anything like saying [at a wedding], ‘Okay, I’ve eaten. I’ll watch the c­ hildren so you can eat now.’ I came home hungry from weddings so many times!” This was indeed a major faux pas, b­ ecause Indian weddings usually involve a large self-­serve buffet that goes on for several hours. It was as if her husband’s inability to recognize her worth had galvanized something inside her, and she connected this hardship to her own development of a more assertive and self-­caring attitude that, in turn, allowed her to be ­there for her ­children ­whether her husband was ­there or not. At the risk of oversimplifying, part of what made Sarita and Nirmala dif­fer­ent from many other w ­ omen who appear in this book is the fact that they departed from some of the norms of domestic modernity that I described in chapters 1 and 5. This is evident, for instance, in Sarita’s common-­sense approach to her own diabetes care. Her statement that she would never wait to eat lunch ­until her ­children came home from school b­ ecause that would put her health in danger may not sound revolutionary on first glance, but it amounts to a willingness to sacrifice some be­hav­iors indicative of ­family fidelity in order to maintain one’s self-­care. This is something that few w ­ omen in my study ­were able to do. Think, for instance, of Krishna, who refused to eat in the morning before completing her pooja, or even of Rita from the previous chapter, who got so sick ­after ­going out to satsang without eating that she nearly passed out in the pharmacist’s shop. This matter-­ of-­fact attitude was similarly evident in Sarita’s ability to recognize that she could not care for her hospitalized husband ­unless she cared for herself. Sarita also expressed suffering differently than most of the w ­ omen in my study. She was unusually open about it. She reported breaking down in “bouts of self-­pity” only once or twice during her husband’s illness, but at the same time acknowledged that it was legitimate to feel sorry for herself u­ nder the circumstances. This was quite distinct from the indirect mode of complaint through the language of tension that most w ­ omen used. Sarita’s actions h­ ere ­were significant ­because they challenged dominant narratives of female propriety that hinge on a habitus of self-­sacrifice and an avoidance of acknowledging one’s own suffering. Although resilience is usually assumed in the health lit­er­a­ture to be a laudable individual quality that should be cultivated b­ ecause it improves wellbeing, a more critical interpretation views the concept as simply another way for biomedicine to assert moral authority over individuals. Like many other aspects of neoliberalism, a resilience framework is ontologically committed to individual responsibility and adaptability as the key f­actors in making a good life pos­si­ble ( Joseph 2013). For both Sarita and Nirmala, for instance, resilience hinged on their ability to prioritize their own wellbeing over their care of o­ thers, but not across the

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board in their lives—­only to ensure that they would be able to continue caring intensively for their families. Both w ­ omen ­were engaged in a very specific form of “selfishness”-­for-­nonselfish-­ends that fits neatly with the habitus of self-­sacrifice I described in chapter 5, even as both rejected some of the norms being imposed on them. Indeed, ­these ­women convinced me that perhaps self-­sacrifice and diabetes self-­care ­were not mutually exclusive possibilities, but in fact could coexist within North Indian cultural logics.

Conclusions: Questioning the Assumptions Under­lying Biomedical Diabetes Management Resilience is responding to adversity with preserved or improved wellbeing, and although the strictly psychological definition of the concept is limited, the broader concept is useful for thinking about the vari­ous ways in which ­women live well with diabetes. I characterized the ­women in this chapter as resilient ­because, in dif­fer­ent ways, they all struck a balance between the need to care for ­others and the need to care for themselves. Resilience is a useful construct for talking about how w ­ omen do well, but the self-­care emphasis of resilience deserves critical consideration ­because it aligns closely with the proposition that the only route to happiness with diabetes is biomedical compliance. Moreover, it downplays the centrality of interpersonal support for t­ hose with chronic illnesses by focusing only on individual-­level characteristics that define resilience. Sudesh and Krishna showed how some w ­ omen are resilient against diabetes itself—­that is, they have poor blood sugar control but nevertheless maintain good ­mental health and a good quality of life. Like them, many ­women with whom I worked had poor diabetes control, yet still lived well with their diabetes. This brings up compelling questions about what it ­really means to “have” diabetes, what it means to live well with the condition, and what is—­and what should be—­the ultimate goal of biomedical treatment for diabetes. Although Sudesh and Krishna ­were not succeeding in managing their diabetes by biomedical standards, they ­were succeeding in maximizing their quality of life by making their diabetes-­management routines fit in with the other demands, expectations, and desires that ­shaped their lives. Their success struck me as worth examining closely, especially ­because it would not be recognized as a success by most biomedical models. This discrepancy sheds light on one of the questions that opened this chapter: why a person with diabetes might have a lot of resilience, defined in psychological terms, but why that might not transfer to better blood sugar control. Sarita and Nirmala, by contrast, illustrated how intentional, self-­oriented care can help some ­women manage their diabetes and their ­mental health resiliently through life crises such as the near-­death of a loved one or long periods of ­family separation. As opposed to Sudesh and Krishna, who thrived despite their

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diabetes, for Sarita and Nirmala, medical evidence of well-­controlled blood sugar served as “proof ” of their resilience; each talked with pride about how she took care of herself, using the language of blood sugar control to support t­ hese claims. The biomedical system of diabetes management is predicated on ideals of self-­ care and self-­nurturance that are rooted in Western conceptions of in­de­pen­dent selfhood, a theme I discussed at length in chapter 3. To access motivation for biomedical self-­care, ­people must have a foundational conception of personhood that views the individual and her body as the primary functional unit, rather than, say, the ­family as the primary unit of concern. We cannot go back in time to determine how they came by it, but the ­women in this chapter demonstrated a foundational understanding of a valuable “self ” who needs caring for, and whose care deserves to be prioritized. Sarita’s case was especially illustrative of this tendency: although her husband was gravely ill in the hospital and their lives ­were in crisis, she made sure to take care of herself so she could “feel strong.” It is prob­ ably no coincidence that Sarita was also the most educated and most Westernized of the four, having lived in Western Eu­rope for extended periods of time; as a result, she would have been more directly exposed than the ­others to Euro-­ American norms of focusing on the individual as the primary social unit of analy­sis. The fact that each of ­these ­women seemed able to live well with diabetes ­because of be­hav­iors that departed from gendered cultural norms brings up a troubling set of possibilities that I want to address before closing this chapter. Chapter 5 argued that t­ here is incongruence between the individual-­oriented ideology of biomedicine and ­women in North India who do not approach their diabetes with such an individualistic attitude. ­Women who subscribe fully to the habitus of self-­sacrifice are less able to actualize self-­care according to the requirements of the biomedical model than the ­women in this chapter did. In many ways, a resilience framework simply recapitulates the problematic focus on individual self-­care as a crucial moral and logistical aspect of diabetes management, rather than offering an alternative viewpoint ( Joseph 2013). If being resilient in a medically acceptable manner means rejecting some aspects of gendered self-­sacrifice, then biomedical conceptions of living well with diabetes remain pitted against Indian w ­ omen’s conceptions of living well. ­These need not, however, be mutually exclusive frames of reference about how to live a good life. Based on the experiences of ­women like ­those in this chapter, I suggest that being self-­motivated with re­spect to one’s healthcare and being oriented t­ oward the care of ­others are not necessarily mutually exclusive. It is true that to varying extents, all four ­women in this chapter displayed in­de­pen­dence ­toward their diabetes self-­care that contradicts the emphasis in North Indian socie­ties on ­women’s self-­sacrifice. However, each remained embedded within the kinship and self-­sacrificial norms of North Indian womanhood as well. Nirmala, for instance, spent most of her daily life caring for her ­family, and she quietly bore a

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lot of sorrow caused by her unsympathetic husband—­two ­things ­women in North India are “supposed” to do according to the social roles defined by a habitus of self-­sacrifice. Yet, when it came to her diabetes self-­care be­hav­iors, she departed from this habitus and took the initiative to eat differently than the rest of her ­family, get regular exercise, and go for checkups. Sudesh’s case was another example of self-­care in a life other­w ise marked by self-­sacrifice; when it came to her own health, she acted individualistically. However, when it came to her understanding of her own responsibilities, she prioritized the care of ­others—­for example, by not looking for a job ­because someone needed to stay home to look ­after the ­house and the ­children. Remarkably, the life crises of three of the four ­women in this chapter centered around their husbands. This fact serves as a reminder of the importance of ­family dynamics and the extent of many ­women’s financial, emotional, and structural dependence on their husbands in this cultural context. Understanding how and when w ­ omen do and do not comply with biomedical diabetes-­management routines that ­will purportedly help preserve their long-­ term health requires acknowledging the day-­by-­day difficulties ­these routines pres­ent. Considered from this perspective, it should not be surprising that some ­women elect to modify or ignore portions of their management routines. A careful look at their ways of making ­these choices suggests that they are working to strike a balance between their physical healthcare and their quality of life, both at pres­ent and in the ­future.

7 • CONCLUSION Diabetes as Life

I began this book with the story of Maya, the young w ­ idow who was stuck in her in-­laws’ ­house ­after her husband died suddenly. Maya was unable to take care of herself ­because of heavy domestic responsibilities and ­because her controlling in-­laws ­were unsupportive of her. Before meeting ­people like her, I had not explic­itly planned to study gender, modernity, and diabetes; it was through the research pro­cess that I came to understand diabetes as a sort of “natu­ral experiment” in cultural change around gender and propriety in North India. Biomedical priorities around diabetes management are strongly s­ haped by the global health-­governance activities of international organ­izations such as the World Health Organ­ization and the International Diabetes Federation. The term healthism has been used to describe an ideology in which health self-­promotion is a central criterion for defining and achieving overall well-­being (Crawford 1980; Guthman 2011). ­There is indeed a “healthist” orientation to most of ­these globally determined models of diabetes self-­care, which are grounded in neoliberal ideals of personal betterment, self-­control, and bodily discipline. In healthist orientations, a person’s physical health (or lack thereof) becomes an index for assessing one’s overall well-­being and, sometimes, even their larger worth. As I quickly learned, ­these healthist priorities are not necessarily ­those most relevant for North Indian ­women. My research and writing evolved to focus on exploring how w ­ omen attempted to make sense of this conflict in priorities and its implications for their health, their families, and their moral standing. The most pressing question on my mind when I met ­people like Maya and Sita was how they had come to be living in situations where no one seemed to be concerned about their well-­being, even though they spent the vast majority of their time working to ensure the well-­being of ­others. What ­were the kinship dynamics, the role expectations, and the thresholds of acceptable well-­being that allowed ­people to overlook their situations? What historical and cultural forces served as the backdrop of their everyday lives? How did they, and o­ thers, express distress? Why did some w ­ omen strug­gle so much, 142

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when ­others did not? Th ­ ese ended up being the key questions that drove this book. ­Here I want to briefly revisit each of them and offer some ideas about how one might integrate the findings of this book into concrete public health recommendations.

Diabetes and Tension in Balance Tension: this single word encapsulates so much about the positionality of the ­women who participated in my research. This is b­ ecause the term is both an expression of distress and a way to discuss the feeling of being stretched between competing priorities. It includes no implication of a resolution between opposing forces, and more often than not, the w ­ omen with whom I worked w ­ ere engaged in a highly intricate balancing act where they held seemingly opposing priorities side by side. One of the first balancing acts I described in the book was ­women’s dual imperative to be both domestic and modern in urban North India. ­People often say that an emphasis on the individual is becoming more common in India ­because of the importance of education and employment opportunities that p­ eople access through individual achievements, such as high test scores. Dr. Nair, the young psychologist who first appeared in chapter 4 talking about how w ­ omen ­were grappling with changing cultural values, felt that this new emphasis on individualism was crucial for understanding her female patients. Drawing from her psy­chol­ogy training, she explained it this way: “See, India’s typically known as a ‘collectivist society,’ and we seem to be taking more and more from what­ever’s understood as an ‘individualistic society,’ and that’s a major negotiation that I think large parts of Indian society are making.” Quite popu­lar as a tool for explaining cultural differences in the 1980s, this individualism-­collectivism dichotomy has come ­under criticism for its us-­versus-­them approach to understanding Asian and Euro-­ American differences in culture, but has never quite died off (see Nisbett 2003 for a relatively recent example). It has even been suggested that India is a special case of “individualism in a collectivist culture” (Sinha and Tripathi 1994). Flawed though the concept might be, Dr. Nair seemed to think that the negotiation between individualist and collective pursuits was one of the root ­causes of ­mental health prob­lems among t­ hose she counseled on a regular basis. She went on, “So, what was an impossibility [before]—­for example, moving out of the parents’ home, ­either before or ­after you get married, u­ nless and ­until you have to work in a dif­fer­ent city—it was an impossibility. It was not heard of. You ­don’t do it. You just d­ on’t do it. And that is part of the collectivist society.” Dr. Nair claimed that no w ­ oman in India was immune to this conflict. “A large part of Indian society is negotiating with t­ hose values. So I think that’s it; that would be the most impor­ tant structure that we are trying to break down but that we are also trying to hold onto.” Although she initially struck me as someone so aware of this pro­cess of

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culture change that she must herself have reconciled it, I found out ­later that she too was immersed in this “state of flux,” as she called it. Having recently married and moved in with her parents-­in-­law, she was facing im­mense pressure from the joint ­family to pull back from her ­career and start having ­children, despite having just earned her PhD and developed a successful research-­based ­career. The biomedical imperative to prioritize one’s own needs is complex for w ­ omen with diabetes in North India b­ ecause it dovetails with some aspects of domestic gender norms while si­mul­ta­neously conflicting with ­others. In this book I used the phrase “domestic modernity” as shorthand for describing the dual expectation that w ­ omen should be grounded in the domestic sphere yet also conversant consumers of modern modes of entertainment, work, finance, education, and self-­ presentation. On the one hand, the need to perform vigilant self-­care when one has diabetes is closely aligned with the purported shift in North India ­toward individual achievement as a yardstick of success—­the “modern” part of domestic modernity. In diabetes management, the main mea­sures of failure or success are an individual’s blood test numbers and self-­management activities; t­ hese are direct expressions of individual action. On the other hand, the self-­care imperatives of diabetes conflict with other value systems that evaluate ­women’s success based on their cultivation and maintenance of a gendered domestic realm—­the “domestic” part of domestic modernity. W ­ omen ­were often holding ­these priorities in tension. ­There is no clear path for w ­ omen attempting to cope with the disjuncture between what their doctors tell them they are supposed to do and the demands of their gendered f­ amily roles: most have to choose e­ ither to do what their doctors say and neglect impor­tant roles, or maintain their roles and ignore their doctors. This may sound like an overly rigid characterization of the situation, but not once during the year of research did I observe a doctor conceding that a patient might prioritize any other aspect of life over their diabetes control. Biomedicine pres­ents ­women with very few behavioral options that fall between ­these two extremes. Like Snell-­Rood’s interlocutors in Delhi slums, the ­women in my study who did manage to reconcile t­ hese priorities used their own techniques to generate stability and inner well-­being that allowed them to persist despite difficulty (Snell-­Rood 2015a). Such strategies might include modifying the doses or timing of one’s medi­cations, as Sudesh did, ignoring some aspects of diabetes management while adhering to o­ thers, as many o­ thers did, or even using blatant self-­neglect as a way of eliciting care from ­family members, as Rita did. Among the w ­ omen in my study, both diabetes and “tension” ­were quintessentially modern modes of complaint ­because ­people understood them as recent phenomena relating to urban, modern lifestyles and modes of consumption. Scholars who work in India have often characterized modernity as an agent of physical and m ­ ental illness that becomes embodied through modern modes of

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consumption (Ecks 2014; Nichter 2001; Solomon 2016). According to ­these ­ethnographers, diabetes, obesity, and digestive prob­lems are indicators of the body’s absorption of harmful modern influences: pro­cessed foods, sedentary lifestyles, and the overconsumption entailed in “enjoying too much life” (Solomon 2016, 4). Like anthropologist Stefan Ecks’s Bengali in­for­mants who complained of generalized digestive prob­lems, ­people in my study used the word tension as a very general way of talking about the “bads” of modernization (Ecks 2003, 9–10). For ­women in Delhi, diabetes and tension ­were both symptoms and outcomes of a defective modern society. Work among Mexican immigrant ­women with diabetes in the United States indicates that diabetes can serve as a conduit for larger life complaints (Mendenhall et al. 2012), just as Dr. Gupta observed when he said that the language of tension allowed his patients to use their diabetes “as a peg to hang all of your prob­lems on.” Diabetes and tension functioned as intelligible ­causes of ill-­being, and also as idioms ­people used to express their broader anx­i­eties about the negative aspects of modern life. For the w ­ omen in my study, t­ hese included changing living arrangements that created f­ amily conflict, socioeconomic in­equality, the adulteration of foods with pesticides, the increasing consumption of pro­cessed foods, pollution, and the stresses of living in a big, noisy city. The auto-­rickshaw driver who told me that ­there was tension in Delhi b­ ecause no one resolved conflicts “with love,” but instead remained strangers with one another, is an example of this construction of tension as a consequence of modernity. Most of the ­women in my study did not have well-­controlled diabetes according to biomedical standards (recall that only 30 ­percent met the international standard criteria for good glycated hemoglobin), but to conclude that this meant they ­were not working hard to manage their diabetes would be wholly wrong. ­Behind the scenes, they ­were all shouldering heavy burdens of the illness work, everyday-­life work, and identity work that are entailed in keeping a life g­ oing with a chronic disease (Corbin and Strauss 1985). The w ­ omen’s doctors ­were aware of ­these strug­gles, but they rarely ­were able to recognize the work that ­women ­were ­doing around their diabetes u­ nless their blood sugar reflected the outcomes the doctors w ­ ere looking for. Doctors assumed that more work would lead to better health outcomes, but the ­women in this book demonstrated that the good/controlled versus bad/uncontrolled equivalence is not so clear in lived experience. This is largely b­ ecause ­there is profound social meaning attached to ideas of self-­and other-­care, control, and giving in North India. For some, I found, lack of diabetes self-­care can function as a site for exercising personal agency ­because it allows ­women to partake in impor­tant self-­sacrificial roles and, at the same time, to elicit care from their ­family members. This was the case for Rita, the ­woman from chapter 5 who demanded her f­ amily’s care by rejecting it. Manjot, the wealthy ­widow from chapter 3, also did this when she said very pointedly in front of her ­daughter that her uncontrolled diabetes made her feel like d­ ying sometimes. We

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have to redefine what counts as “work” in the context of diabetes daily management and in broader social roles to truly account for the experiences of ­these North Indian ­women. One of the most surprising findings of this study was that even ­those ­women with poorly controlled diabetes often w ­ ere not experiencing the physical and ­mental health complications that one might expect based on their blood sugar data alone. In chapter 6, I described this seeming contradiction as a pattern where many ­women in my study suffered from the “disease” of diabetes but not from what medical anthropologists refer to as the “illness,” or the personal and interpersonal consequences of having a disease (Helman 1981; Kleinman 1980). This does not negate the suffering of w ­ omen like Manjot (chapter 3), the wealthy ­widow who could not get her diabetes u­ nder control despite her best efforts, or Rita (chapter 5), the ­woman who had ended up in the ICU several times ­because of her uncontrolled diabetes; their experiences form a crucial part of the book ­because they demonstrate how very difficult diabetes can be, and how life and death literally hang in the balance of its management. The broader statistical trends in the 180 w ­ omen with diabetes in the study suggested that most had poor blood sugar control, but that ­there was ­little relationship between their blood sugar control and their ­mental or physical health. This pattern was reflected in the cases of Sarita (chapter 6), whose husband spent a long time in the hospital ­after his heart operation, and Indu (also chapter 6), the w ­ oman with the only child who educated herself about diabetes through reading and tele­vi­sion. Such ­women ­were aware of the biological fact of their diabetes, but they managed to live life as before, which limited the social complications often associated with diabetes (such as reduced functioning in impor­tant social roles). Concentrating on the care of ­others might detract from ­women’s diabetes management, but it was a very impor­tant source of symbolic and social capital that contributed to ­women’s broader well-­being, even when their diabetes was not well controlled. Similarly, Snell-­Rood noted that “living for ­others” served as a technique for generating stability in New Delhi slum-­dwelling ­women’s lives b­ ecause it “furthered their awareness of their moral capacity—­while ensuring that their frustration with their families would not determine their own character” (2015a, 218). ­Women’s participation in gendered self-­sacrifice functioned as a source of resilience against the t­ rials of life, and at the same time as a source of difficulty ­because it did not always lead to the best diabetes control. Given the social value of potentially not following one’s diabetes-­management recommendations, one of my aims in this book was to critically examine the blaming discourse that informs most biomedical opinions of how diabetes should be handled (and, in parallel, that circulates in much lay discourse about diabetes and other diet-­related diseases). The assumption is ­simple: the outcomes associated with diabetes are the direct result of individual choice. In chapter 2, a brief look at the writings of Dr. Elliot Joslin, the founder of con­temporary biomedical dia-

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betes care, showed how morally charged ideas about diabetes and control have been at the center of biomedical diabetes care since its inception. Rather paradoxically, given the broader cultural focus on self-­sacrifice as a womanly virtue, some of the families in my study accused their diabetic wives and m ­ others of sabotaging themselves. Doctors, too, sometimes berated w ­ omen who w ­ ere unable to manage their blood sugar the way they w ­ ere instructed to. So, although the moral pendulum for Indian w ­ omen often swings t­ oward the care of ­others, the moralistic connotations of diabetes attempt to swing it in the other direction ­toward self-­care. ­Family members, too, sometimes blamed ­women for their poor diabetes health at the same time they expected them to be taking care of domestic affairs. Despite the prob­lems inherent in biomedicine, we cannot fully discount ­biomedicine in the case of diabetes ­because its existence as a disease entity is predicated on biomedical definitions and biomedical management. It is easy to be critical of biomedical authority (see Baer and Singer 1995 for an overview of the critical tradition in medical anthropology). It is harder to hold the critical perspective and at the same time take seriously the fact that biomedicine can improve lives. Diabetes demands that we attempt to do just that, however, ­because the disease as we know it is contingent on the existence of biomedical therapies. ­These therapies include injectable insulin, blood sugar monitoring, and a detailed understanding of the ways in which food intake and physical activity affect blood sugar. When the treatment protocols ­were developed in the early twentieth century, they fundamentally changed the nature of diabetes from a death sentence to a chronic condition that a person could live with for years, even de­cades. The therapies are not just technological, but technocratic: they exert power and control over ­people’s lives, and for this reason they deserve to be critiqued. But the therapies also help ­people stay alive, where they once would have died quickly. Throughout the book, I have shifted between being very critical of biomedicine to privileging its knowledge of diabetes. This was not an accident; as the paradoxes I’ve just outlined demonstrate, the relationship between biomedical therapy and lived diabetes is an ambiguous and sometimes contradictory one. It is thus worthwhile to critique the presumption that biomedicine is the only way to live well with diabetes, and that biomedical health control should be the principal goal of a person’s life. ­Because of the heavy burden they impart to individuals, biomedical regimens are not for every­one. In an ideal situation, p­ eople with newly diagnosed diabetes would learn what biomedical management entails logistically, financially, and emotionally and be allowed to choose what aspects are tenable for them. As it stands now, this is rarely a conversation between diabetes physicians and patients; I never once observed a consultation where a doctor presented the biomedical path as an option rather than a necessity. The momentum created by the complex self-­governance of diabetes management often makes all associated activities appear as if they are therapeutic necessities,

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when in fact they may not be (Feudtner 2003). Based on my observations, the assumption was that if a person presented herself at a biomedical clinic, she was (or should have been) as fully committed to biomedical intervention as her physician was. This was b­ ecause physicians uniformly assumed that their patients want to live as long as pos­si­ble, and they saw the preservation and prolongation of life as their highest calling. But this model only ­really works when a patient buys into the ideology of healthism, in which ­people are willing to subordinate other desires or goals that might get in the way of the pursuit of health. It also only works if p­ eople have full access to the knowledge and technology they need to engage in the relentless pursuit of health. This was unrealistic. My research suggested that plenty of ­people with diabetes would prefer to live life on their own terms rather than follow the dictates of biomedical management. Moreover, ­people ­were almost always working with partial information about what biomedical management entails, or with only partial access to the full complement of therapies available in biomedicine. Very few ­people with whom I worked had access to the most advanced diabetes-­management technologies. By “access,” I mean not only the possibility of purchasing technologies like blood glucose monitors or insulin pumps, but also sufficient knowledge to manage t­ hese devices and interpret their results, and the logistical and affective support to do so from ­family members. The ideal of full access is perhaps a fantasy anyway; ­people w ­ ere always working with what they had. This even included physicians, who had to work “within [their] means and circumstances” according the doctor from chapter 3, who sometimes saw seventy patients in two hours at the rural health clinic where he occasionally volunteered. With this limited time, doctors could at best only distribute some oral medicines and impart some basic knowledge about dietary control. This was the extent of the resources that many, especially the poor, had at their fingertips. How could biomedicine respond to a person in such circumstances who still did not or could not adhere to that diet and t­ hose medi­ cations? Such affordances would require a re­orientation of biomedicine in India and elsewhere ­toward treating the ­whole person—­learning about the means at their disposal, asking what is best for them from their perspective, and taking their responses seriously. Diabetes is nothing if not modern. Although it is usually the individual body that gets blamed for the excesses of modernity, Solomon (2016) makes the point that in modern India, the lines between the self and the surrounding world are not as clear as medical and public health discourses typically assume. In this book, I have argued that we cannot simply rely on neoliberal health discourses that situate all responsibility for health or illness within the individual. At the same time, we cannot exclusively look to structural conditions to explain p­ eople’s health. Instead, we have to hold in tension (so to speak) both of t­hese poles, ­because both act in ­women’s lives.

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Translating Medical Anthropology Research into Practice Medical anthropology has a long tradition of applied engagement with public health and biomedicine. Though is impossible to distill the complex web of social and individual ­factors that make up a life into a single statement that captures the essence of diabetes among ­women in India, the experiences of the ­women in this book share some common ele­ments that suggest potential inroads to improvement of diabetes care. The recommendations I describe below address improvement of diabetes on multiple levels: ­women’s compliance with biomedical recommendations; ­women’s ­actual blood sugar control; and ­women’s quality of life. Encourage Physicians to Think Critically about How Diabetes-­Management “Success” Should Be Defined ­There ­were many w ­ omen in this book who had poor blood sugar control but lived with few diabetes complications, sometimes for many years. As I discussed in chapter 6, t­ hese experiences beg the question: what constitutes “living well” with diabetes? Collectively, their experiences suggested that the relative importance of meeting blood sugar control guidelines must be balanced against the concern of maintaining a quality of life acceptable to the person living with diabetes. The American Diabetes Association, the source of most official guidelines about how strictly blood sugar should be controlled, views as its mission the delay or prevention of diabetes-­associated complications. Such complications can indeed be traumatic or life threatening, as in the case of Rita from chapter 5, who nearly died several times b­ ecause of her uncontrolled diabetes. The ADA crafts its recommendations based on the findings of longitudinal research, which determines the blood sugar thresholds below which the fewest complications occur. ADA recommendations represent a “best-­case scenario” of optimal blood sugar control; they do not consider the burden that attaining this ideal might place on a person with diabetes. This burden ­will differ from person to person based on life circumstances and personal attributes. A seventy-­year-­old ­woman with terminal cancer and diabetes would prob­ably not need to focus on maintaining tight blood sugar control, but would instead focus on maximizing quality of life before her impending death. A twenty-­seven-­year-­old ­woman with early-­onset diabetes, however, might be more concerned about maintaining strict blood sugar control ­because she knows that she w ­ ill live with the disease for a much longer time. What is most impor­tant, and what constitutes an acceptable quality of life, differs for each individual. The conversation about what is at stake in diabetes should occur between doctor and patient, so that they can make informed decisions about how best to approach the patient’s care, and how best to integrate it with the other priorities in her life. The conversation should be revisited periodically, ­because ­women’s

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priorities shift over time. The onus should not be on the person with diabetes to meet stringent diabetes-­control recommendations with no regard to other life priorities. Improve Early Detection of Diabetes An impor­tant aspect of improving diabetes care in India ­will be facilitating earlier diagnosis, which can help prevent or delay the onset of complications (Marshall and Flyvbjerg 2006; Patel et al. 2011). This would not only reduce the suffering that w ­ omen experience before being diagnosed with diabetes, but might also help improve long-­term outcomes by providing opportunities to start diabetes-­ management routines before the illness reaches an advanced stage. To accomplish this goal, the government of India has considered launching a population-­wide diabetes-­screening campaign, but the expense and the logistical challenges associated with extending such a campaign to rural areas have thwarted efforts to develop it (Ali, Narayan, and Mohan 2009). Such an effort would require major government investment in healthcare. India’s government currently spends less than 4 ­percent of its total GDP on health, as opposed to 17 ­percent spent in the United States (World Health Organ­ization 2016). This is one of the lowest per-­ capita healthcare expenditures in the world, and its improvement would require nothing less than a complete restructuring of the healthcare system. On a smaller and perhaps more feasible level, positive change could come from new alliances between biomedical and nonbiomedical healthcare providers who see ­people with diabetes, including Ayurvedic, Unani, and homeopathic doctors, faith healers, and bonesetters. Such healers often occupy central social positions in villages or urban neighborhoods and serve as gathering points for large groups of p­ eople from surrounding areas (Flueckiger 2006). They also frequently refer patients to biomedical doctors ( Joyce  B. Flueckiger, pers. comm. 2012). Involving healthcare providers from India’s well-­developed nonbiomedical systems in diabetes education could help it reach p­ eople who might other­w ise not get it ­because they might not regularly go to biomedical doctors. Develop Locally Relevant, Robust ­Mental Healthcare in India A key way to improve healthcare in India generally would be to develop more extensive m ­ ental healthcare programs and decrease stigma surrounding m ­ ental illness. India has rich traditions of religious and social routes for addressing distress, and t­hose existing resources need to be part of any m ­ ental healthcare capacity-­building endeavor. The increasing penetration of biomedical models of psychiatry in India means that psychiatric care w ­ ill also likely need to be part of the answer, and at pres­ent ­there are very few biomedical prac­ti­tion­ers of psychiatry and psy­chol­ogy. As Dr. Nair told me, “­There are not enough good ­mental health prac­ti­tion­ers. I can count the number of good ­mental health professionals on my fin­gers in Delhi—­good ones, trained ones. Which means that around India,

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it’s pretty sad.” The District ­Mental Health Program, a subsidiary of the National ­Mental Health Program, was conceived some twenty years ago to address this gap in biomedical ­mental healthcare. The program’s goal was to develop regional ­mental health centers in about 20 ­percent of India’s 640 districts, yet virtually no programs existed in ­these districts by the time I was conducting my work (member of the National M ­ ental Health Task Force, pers. comm. 2011). Instead, the money allocated for the centers has e­ ither been siphoned off by corrupt government officials or simply left unused. At the time of my research, the Ministry of Health and Social Welfare had just convened a new task force to ameliorate the prob­lem, but in 2011 it was only in the investigation and planning stages. Task-­force members faced many obstacles; even basic epidemiological data about the prevalence of m ­ ental health disorders in India did not exist. The psychiatrists with whom I worked in Delhi estimated that common m ­ ental disorders like depression and anxiety occurred in 5 to 10 ­percent of the urban population, but no survey has been conducted in Delhi to corroborate ­these figures. The fact that ­women and physicians linked ­mental health so closely with diabetes suggests that improving m ­ ental healthcare in India could have “double returns” for diseases like diabetes. The diabetes physicians agreed that treatment for depression helped their patients manage their diabetes better, and vice versa. This was consistent with the published lit­er­a­ture demonstrating that ­mental health prob­lems and diabetes interact synergistically (Egede and Ellis 2010; Golden et al. 2008; Mezuk et al. 2008; Renn, Feliciano, and Segal 2011). Even when biomedical ­mental healthcare is absent, ­people have indigenous systems for addressing distress, grief, and m ­ ental dysfunction; ­these need to be considered when scaling up psychiatric care. This is another juncture where collaborations between biomedical and nonbiomedical providers could be fruitful. Part of the reason why ­mental healthcare development has faltered in India and many other low-­and middle-­income countries is ­because officials are attempting to create an elaborate psychiatric system and insert it into existing contexts with ­little attention to local adaptation or existing local resources for stress management. Nonbiomedical providers in North India tend to attract large numbers of ­people with long-­term illnesses that have no obvious cause, have no easily apparent treatment, and for which biomedicine can offer no cure, including ­mental illness. Moreover, the vast majority of w ­ omen in this study had strong religious faith and regularly attended a ­temple, prayed at home, and practiced meditation or yoga. Th ­ ese practices are highly beneficial for both social and m ­ ental health, and could easily be encouraged as culturally appropriate ways of managing stress among ­people with diabetes in India ­because they are already quite familiar activities. Rather than simply scaling up biomedical psychiatric care in India, a blended approach that integrates providers, diagnoses, and treatment techniques from nonbiomedical systems would likely be more efficient and culturally appropriate.

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Some of the diabetes physicians with whom I worked recognized the value of indigenous methods of stress management. Dr. Singh, an el­derly and deeply religious Punjabi Sikh cardiologist, explic­itly recommended that all of his chronically ill patients incorporate meditation and prayer into their lives as part of their illness-­ management routine. As he explained to me in a slow, thoughtful manner, “I stress on the patients to meditate according to their own religious belief. When you are meditating, your body secretes endorphins, relaxing the mind. And the endorphin is equivalent to morphine. Your own hormones are secreted, your body is at peace, where you can fight disease, anxiety, and tension in a better way. . . . ​ Then you can look ­after your body in a better way. You clean your body properly. You d­ on’t smoke, you d­ on’t take alcohol, you d­ on’t chew tobacco. . . . ​[This is] so ­whether you follow the Bible or the Koran or the Gita or Buddha, or any good spiritual religion.” Dr. Singh’s observation that religious practice improved his patients’ physical and m ­ ental health is supported by a large body of lit­er­a­ture demonstrating the positive effects of religious participation on health in dif­fer­ent parts of the world (Aukst-­Margetic and Margetic 2005; Seybold and Hill 2001). ­There are many potential pathways linking religious involvement and health, including the physiological and behavior-­modifying ones that Dr. Singh outlined in his explanation. Unfortunately, ­little work has explored differences in diabetes control between ­those who are more or less religiously engaged. Still, encouraging patients to take comfort in their own religious practice, as Dr. Singh did, would prob­ably be beneficial, and would certainly be culturally appropriate. Empower ­Women to Be Proactive about Their Own Health by Addressing Fundamental ­Causes That Discourage Self-­Care Instead of bringing healthcare campaigns to individuals, such as the diabetes-­ screening program I mentioned above, an alternative approach would be to foster the conditions that empower individuals to come to the healthcare system should they want to do so. A major obstacle to this scenario in India is the fact that, as Rita’s husband said in chapter 5, “One only goes to the doctor when one is sick.” Preventative biomedical care helps ­people avoid acute illness episodes in diabetes, but it is also largely reserved for the elite in India: t­ hose who have time and money to seek out a doctor when they are not urgently sick. When finances are stretched, regular appointments for blood sugar monitoring and medi­cation management usually are not a priority. This is especially true if a ­woman must pay each time she sees the doctor, and must obtain the money for such payments from a male ­family member, as Manpreet from chapter 4 had to do. The doctors in the study opined that increasing ­women’s mobility outside the home and giving them more financial in­de­pen­dence would enhance their diabetes self-­care. Oversimplified though t­ hese explanations are (refer back to chapter 5 for a critical discussion), middle-­class North Indian ­women are increasingly involved in the public sector (Radhakrishnan 2011), so efforts to augment t­ hese

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capabilities could be folded into existing social structures. For example, neighborhood social groups could or­ga­nize trips to diabetes clinics, as some of the ­women in my study already did on an informal basis, or could accompany each other to purchase medicines. Several ­women in the study also noted how they felt motivated to go on daily walks b­ ecause they had friends and neighbors in the community to go with them. The question of financial autonomy is a bit more challenging. W ­ omen could, in theory, engage in home-­based work like Indu (from chapter 6) did, but not ­every ­woman has the skills, time, or resources to do ­things like sewing or tutoring, both of which are common sources of informal income for ­women in North India. In recent years, international development organ­izations have promoted the use of microloans in South Asia as a way to increase ­women’s financial and social autonomy; t­hese are small loans paid out to ­women specifically for livelihood-­related activities, often used for initial investments to get a small business or a farming venture off the ground (see Yunus 1999). Despite the seeming promise of this model, some anthropological work among families receiving microloans suggests that transferring money to w ­ omen in subservient positions can exacerbate, rather than reduce, their disempowerment within their families (Karim 2011). Some might be tempted to conclude that if w ­ omen ­were simply “liberated” in South Asia, strug­gles like ­those I described in this book might dis­appear. That, however, is not true. As I have discussed elsewhere, a habitus of self-­sacrifice should not simply be read as evidence of w ­ omen in North India being oppressed; rather, it is the culmination of a complex set of forces, including colonialism, postcolonial nation-­building, and newly ­imagined forms of Indian womanhood in the global economy. It also, in many cases, provides impor­tant sources of symbolic capital for ­women. To imagine that second-­wave-­feminism-­style protests would “fix” w ­ omen’s difficulties with self-­care is at once oversimplified and highly ethnocentric. Instead, working within existing social norms to help w ­ omen develop tools for coping with ill health is a much more advisable approach. The next recommendation provides one example of how this approach might work. Develop Healthcare Programs That Work with, Rather than against, the Culturally Valued Ideal of ­Women’s Self-­Sacrifice The habitus of self-­sacrifice among ­women in North India often translates into the idea that ­women should prioritize care of their families over self-­care. At pres­ ent, most diabetes physicians recommend programs of treatment that actively oppose this orientation t­ oward other-­care. Instead of working against cultural norms, programs to promote diabetes self-­care could leverage this difference by emphasizing how ­women’s diabetes self-­management is a “­family value” ­because it ensures that they ­will be able to continue providing high-­quality care to their families. Sarita, from chapter 6, recognized that she had to take care of herself to be ­there for her critically ill husband. For her, this was a power­ful motivator, and

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this type of motivation could be harnessed on a larger scale. Th ­ ere is so much propaganda already in place in North India about diabetes awareness; bus and subway placards, newspaper articles, the sides and backs of public transport vehicles, public ser­v ice announcements on TV, and billboards disseminate information about diabetes symptoms and treatment. Incorporating some messages about ­women’s self-­care as a means of facilitating their care of o­ thers would be quite feasible in ­these existing venues. Like the suggestions mentioned in the recommendation about developing locally relevant ­mental healthcare systems, this approach is useful ­because it works within existing systems of beliefs and values, rather than attempting to run against them. Although it may sound s­ imple, media messages that promote a small shift in the valuation of self-­care as a ­family concern could be a crucial point of intervention for culturally sensitive programs designed to improve ­women’s diabetes health in India. Reduce Stigma Surrounding Diabetes and ­Mental Health Prob­lems by Restructuring Medical Discourses of Blame An impor­tant part of improved diabetes care in India and worldwide ­w ill be a shift in mindset on the part of physicians, patients, and the public regarding diabetes, consumption, and blame. If structural ­factors are partially responsible for individuals’ diabetes outcomes, as I have suggested in this book, then blaming individuals for poor diabetes control is unlikely to solve their diabetes health prob­lems. Likewise, using threats as a tool to instill fear (and thus, the theory goes, compliance) is unlikely to be effective ­because patients’ concern about their health is only one ­factor that motivates their choices. As I have shown in this book, equally if not more significant challenges to diabetes control in Delhi are time allocation, unaddressed distress, lack of money, and lack of social support for self-­care within the f­amily. Dr. Saxena described how he and his colleagues gradually became aware that fear-­based treatment was not working: “In the ’80s and ’90s, physicians all over the world, including me, ­were in the business of scaring their patients. By the turn of the c­ entury, we all realized it d­ idn’t help. Hope became a watchword for diabetes in 1999, the same year that the HOPE study came out.1 We have to rethink strategies, and one of them is that instead of fear, we have to give them hope. It works better.” Listen to, and Learn from, Physicians in India Who Are Already Implementing Creative Diabetes-­Management Strategies for Their Patients It may be illuminating to expose the structural ­causes of health prob­lems, but it is also sometimes discouraging ­because most health systems are ill equipped to address inequity deriving from large-­scale historic and economic forces. ­These are well outside most health-­promotion campaigns’ level of influence. One man com-

Conclusion 155

mented when I asked his wife what a w ­ oman should do to care for herself on a daily basis, “Actually, what you are asking is a revolution! ­Women ­here are not taught to think about themselves; they are only for their families, their husbands and ­children.” A “revolution” may be beyond the scope (and interest) of most healthcare providers and health workers focused on improving w ­ omen’s well-­being in India, but diabetes physicians have developed some innovative strategies to assist w ­ omen in managing diabetes. They illustrate that diabetes-­ management routines could be altered in minor ways to better accommodate ­women’s needs and priorities in North India while still allowing them to maintain socially impor­tant roles. Dr. Saxena offered a parsimonious solution that helped address the pushback some ­women faced at home with their diabetic diets. “We insist that they should not come to the clinic alone,” he explained. So, we have a ­family member ­here. We tell them, “This diet is not for a person who has become diabetic; this is also a diet for a person who does not want to become a diabetic,” and that catches their attention. “Oh, ho! ­We’ll also catch diabetes, so we might as well take some care.” Then the lady gets strengthened, ­because if we tell her to reduce the fat intake to a half liter per person per month, she has to cook the meal. If she reduces the oil content at the source, they all start disliking the food, and they blame her: “It is you who have to take this; why are you making us? Put more oil for us.” So we have to tell them that less oil ­will prevent diabetes for you, or ­will prevent hypertension for you. The answer is, one ­family member should accompany, and that solves it.

Dr. Gupta, the diabetologist with international clients, agreed that enlisting a ­family member could be a ­great help for ­women with diabetes. “I’ve found that especially the ­children, in dietary modifications—­especially d­ aughters—­are far more supportive than spouses, who are often busy and have never looked at food in that sense, who ­don’t want to be bothered by all that. ‘You take care of your food’—­you know, that kind of ­thing. The ­children are big supporters in families, I see that.” Two other physicians also specifically mentioned that c­ hildren and grandchildren are reliable, but largely untapped, sources of support for ­women with diabetes. “Luckily, this ­middle and upper-­middle class is having one good ­thing: that the youngsters who are growing up right now in ­these families are very much aware. We ­will call their ­children with them [to appointments]. ­Daughters and concerned sons—if you take them into confidence, then t­ hings go at a faster pace. Spouses, fifty-­fifty. Not as much.” ­People in India very rarely go to doctors alone, but emphasizing that they should always be accompanied by the same person introduces consistency and increases the chances that the companion ­will become involved in the patient’s home care.

156

sug a r a nd Tension

Other doctor-­initiated innovations ­were helping ­women manage their diabetes, too. Dr. Gupta’s elite private practice had recently introduced the mobile-­phone reminder system I described at the end of chapter 3, which allowed patients to send in their blood sugar readings on a daily basis. Although this innovation was being used only with elite patients at the time of my research, it could feasibly be expanded to less wealthy groups ­because mobile-­phone owner­ship is very widespread, even among poor p­ eople. Dr. Gupta also recently added a psychiatrist and a psychologist to his diabetes-­management team in hopes of giving his patients greater opportunity to work through home-­based stresses that contributed to their diabetes vulnerability. “You know, we ­were trained to think about the chronic-­care patient, that your job is to advise them, and if they ­don’t follow it, it’s their prob­lem. If the guy ­doesn’t follow it, what do you do?” asked Dr. Gupta. “But over the years I’ve come to realize that that’s only half the job. We’ve gotta do more.” For Dr. Gupta, who had significant resources at his disposal in the private clinic where he was the head physician, this meant providing f­ ree or low-­cost reminders to patients to perform self-­care between visits, and encouraging them to involve ­family members in their health maintenance. Although such innovations w ­ ere emerging in private healthcare and therefore ­were not yet available widely at the time of my research, they point to the fact that physicians in India are beginning to develop a more holistic approach to chronic-­ disease care that may ease ­women’s strug­gles with diabetes management. ­These steps are encouraging ­because they represent some of the first practice-­based efforts to acknowledge and accommodate the unique social contexts that shape ­people’s diabetes self-­care be­hav­iors in India. The findings I pres­ent in this book suggest that if such efforts could be expanded into the public sector, they might improve diabetes care in India significantly.

Diabetes as Experience Arthur Kleinman, a prominent psychiatrist and anthropologist, once wrote, “The study of the experience of illness has something fundamental to teach each of us about the h­ uman condition, with its universal suffering and death. Nothing so concentrates experience and clarifies the central conditions of living as serious illness” (1988a, xiii). The illness experiences in this book demonstrated, as Kleinman suggests, features that ­were fundamental to this group of Indian w ­ omen. At the heart of many ­women’s trou­bles managing their illnesses ­were conflicts between self and other, home and workplace, liberalism and conservatism. The expressions ­women used to discuss their diabetes-­related prob­lems, such as tension, ­were the very same expressions they used to articulate trou­bles of any kind. Through ­these and other routes, the experience of living with diabetes became, in many ways, the experience of life itself.

Conclusion 157

Diabetes is an odd ­thing. Once an acute disease that resulted in relatively quick death, it is now a manageable condition that may last for most of a lifetime. This is thanks to the advent of medical technologies including insulin therapy, oral hypoglycemic drugs, glucose-­monitoring devices, and now continuous insulin-­ monitoring pumps, which mimic normal pancreatic function via a mechanical device worn outside the body. Yet the trade-­off for longer life comes with a high price, promising years of life “poised against all the ramifications of living with a chronic, often debilitating disease” (Feudtner 2003, 10). One of the most burdensome aspects of diabetes is that it places a person in the position of having to weigh t­ hese mixed consequences continually—­every time she puts something in her mouth, e­ very time she does any physical activity. This entails making microdecisions about what to put first: herself or ­others. And if the answer is to prioritize oneself, what m ­ atters most: immediate gratification or the long-­term pursuit of optimal diabetes control? But this only applies to the lucky ones. ­Those who had the “luxury” of perseverating over their diabetes ­were few in my study, and they ­were not necessarily benefitting from this ability to worry about themselves. Most ­women lacked the time, the money, and the education to place diabetes at the center of their lives. Instead, they attended to other, more pressing needs—­especially ­those of their families, who needed their care and, in complex ways, for whom they needed to care. In this light, it should come as no surprise that most ­people in my study persevered with the lifestyle they had, rather than radically changing every­thing to maintain strict adherence to regimes that limited their activities. Such individuals put off the worry of complications u­ ntil ­those complications actually occurred. I offer this book as a culturally situated study of the many ways in which someone can live with diabetes. Some of t­ hese routes looked very much like what a physician would prescribe; o­ thers did not. Some produced positive outcomes, some negative, and some in between. ­There are many routes to living well or poorly with diabetes, and they are not always the ones we might envision. Ultimately, managing diabetes is managing life, for they are one and the same t­ hing.

APPENDIX: METHODOLOGIC AL NOTES

My study methods w ­ ere designed to generate data on ­women’s experiences with diabetes from as many ­angles as pos­si­ble; this required using mixed methods. During the first phase of research in 2009, my main task was to find out from w ­ omen what they considered to be the most impor­tant roles and daily activities that they performed. It was impor­tant to me to hear from ­women’s own mouths what their everyday lives looked like. This is what anthropologists call the “emic” (or insider’s) perspective. My goal ­here was to familiarize myself not only with what ­women do, but with what they think they should do, so I could eventually explore how diabetes management fit in with ­those priorities. I accomplished this through a series of free list activities in which I asked each w ­ oman to list what tasks a w ­ oman like herself should do ­every day to care for herself, her ­family, and her community (following the procedure for cross-­cultural function assessment outlined by Bolton and Tang 2002). At this time, I had already been sensitized to the importance of tension in w ­ omen’s lives, so I also conducted a free list exercise in which I asked ­women to list as many synonyms, symptoms, and concepts related to “tension” as they could. I systematically analyzed their responses and identified the most commonly mentioned terms, which I used to build assessment tools for daily function and levels of tension in ­women’s lives (Weaver and Hadley 2011). I also worked in this early phase of research on translating the Hopkins Symptoms Checklist-25, an En­glish assessment tool designed to mea­sure symptoms of depression and anxiety, and making sure it worked in Hindi (Weaver and Hadley 2011; Weaver and Kaiser 2014; Weaver 2017). In 2011, I returned, newly pregnant, to begin a year of fieldwork in New Delhi. I worked in most of the same clinics I had in 2009, with a total sample of 280 ­women (184 with diabetes, 96 without). As I described in chapter 1, each day my local research assistant and I would visit one or two clinics and interview consenting patients as they waited to see the physician. Wait times w ­ ere often long, which afforded ample time for interviewing patients. All of the samples we used in the study ­were con­ve­nience samples: I interviewed whoever came in the door and was willing and able to talk with me. I conducted semistructured interviews with a questionnaire based on the information I had collected during the earlier parts of the research (the tension and daily function assessments, plus the translated Hindi depression and anxiety screening tool), and I also took body mea­sure­ments and blood tests with a subsample of 280 ­women with and without diabetes. During the interviews I asked w ­ omen about their backgrounds: their education level, f­ amily structure, ­children, work, age, marital status, recent stressful life 159

160

Appendix

events (Singh, Kaur, and Kaur 1984), and other basic demographic questions. The most complex of ­these to assess ­were caste and class. Caste and class are intertwined in con­temporary India, and they are crucial indices of social standing. Mea­ sur­ing the two was quite challenging ­because, despite their importance, ­women often w ­ ere uncomfortable discussing them with me. For class, ­women ­were unable or unwilling to provide estimates of monthly ­house­hold income for socioeconomic status estimates. ­Because this information was unavailable to me, I deci­ ded to use subjective but locally relevant markers to identify w ­ omen’s class status. My research assistant and I came up with a “rating scale” based on ­women’s levels of education, employment status, husband’s occupation, type of clinic (public or private) they ­were attending, and style of dress. Using this scale, we in­de­pen­dently ranked ­women’s socioeconomic status as lower, lower-­middle, upper-­middle, or upper class. Our rankings agreed 75  ­percent of the time, and when ­there ­were differences I defaulted to my research assistant’s ranking, ­because she was a native North Indian w ­ oman and better understood socioeconomic markers than I did. By her mea­sure, 22 ­percent of ­women ­were impoverished, 24  ­ percent lower-­ middle class, 34  ­ percent upper-­ middle class, and 20 ­percent upper class. By this mea­sure, the majority of ­women in my study— 58 ­percent—­belonged to ­middle socioeconomic classes. Though not a standard way of assessing socioeconomic status, this method drew on the legible aspects of socioeconomic class that ­people use to “read” one another in urban India. I took the risk of asking ­women about their caste ­because caste still profoundly shapes social life, and ­because it is relatively less vis­i­ble than class for someone from outside, like me. Discussion of caste is usually cloaked in the language of po­liti­cal correctness, much in the same way that discussions of race happen in the United States ­today (see Beteille 1990 for an excellent discussion of the many parallels between race and caste). My solution to this was simply to ask in a discreet, courteous, and ­humble manner for ­people to identify their caste for me. Explaining that I was asking ­because I was a foreigner who did not understand the system often helped allay ­people’s concerns about my motivation for asking. ­Later on, in the last phase of research, my research assistant and I spent time ­doing qualitative work in the homes of a subset of thirty ­women; this is the phase of the work when the majority of the ethnography in this book was done. Some ­women ­were included or excluded purposively to maximize variety in religion, age, and socioeconomic background. The interviews loosely followed Arthur Kleinman’s seminal interview guide designed to elicit illness narratives, or the stories p­ eople tell about their illness experiences (Kleinman 1988a). When additional ­family members such as husbands, c­ hildren, and daughters-­in-­law ­were available and willing to participate, I asked them if they perceived any difference in their f­amily routines or in their diabetic ­family member’s be­hav­iors since her diagnosis. I voice-­recorded ­these interviews for ­later transcription and translation, and took a photo­graph when ­women permitted it.



Methodological Notes

161

In many cases, the interviews in ­women’s homes led to further interactions, which became the primary source of the qualitative information I have about ­women’s everyday lives. Often, for example, ­these home-­based interviews (which would have taken perhaps a half hour to complete without any discussion outside the list of questions I came prepared to ask) morphed into half-­or full-­day events involving shared meals, tea, trips down the street to the con­ve­ nience store, a visit to a nearby t­ emple, or a chat with neighbors or visiting relatives. On several occasions ­these became multiple visits over multiple days, weeks, and months. The imminent birth of my ­daughter, and her birth ­toward the end of my research, ­were power­ful sources of bonding with many of the w ­ omen in my study, and this opened doors of friendship forged on a shared ground of maternal concern. I struck up a particularly friendly relationship with a c­ ouple of ­women, whose ­houses I visited several times over the course of the research for meals, cooking lessons, shopping, trips to see their favorite nonbiomedical healer, or, ­after my baby was born, to introduce her around. ­People back home thought that being pregnant and having a child while d­ oing fieldwork was a terrible idea, but in retrospect it would be hard to overestimate the positive effect it had on my time in India, both inside the clinical settings where I spent much of my time, and outside in ­women’s homes and the broader community. When I was not “officially” interviewing p­ eople, I spent a lot of my time in activities that p­ eople with diabetes in my neighborhood also engaged in. Th ­ ese ­were not at all structured, but they immersed me in the rhythms of everyday life in middle-­class India and provided insight into the ways in which ­people manage their health on an everyday basis. I regularly went out during peak times—­ early morning, around six a.m., and eve­ning, around six p.m.—­when ­people of all ages emerged from their flats to walk vigorous laps around the small park in the ­middle of my housing compound. Groups met in ­these parks to practice yoga, and I often overheard ­people swapping tips about diabetes management. I struck up a friendship with a particularly health-­conscious older ­woman in my neighborhood who, although she did not have diabetes, had quite a lot to say about it. I visited shops that specialized in diabetic-­friendly foods (surprisingly to me, ­there ­were not many of t­hese in the city at the time of my work), and chatted with my local pharmacist about diabetic medicines. Th ­ ese activities provided much of the backdrop against which I came to understand the lives of the ­women with whom I worked.

ACKNOWL­E DGMENTS

So many individuals contributed to the conceptualization, execution, and writing of this proj­ect. First, I want to thank my academic mentors for their confidence—­ and patience—­with me. They include my doctoral committee co-­chairs, Drs. Peter J. Brown and Craig Hadley, and my committee members, Drs. Ron Barrett, Joyce Flueckiger, and Carol Worthman. I resolved early in my doctoral studies to do absolutely every­thing Peter told me to do, and that resolution never steered me wrong. I’m honored to continue collaborating with Craig more than ten years down the road, and I count him as one of the most formative influences on my ­career. Carol might have thought I was bluffing when I showed up at her office and declared that I was g­ oing to be a biocultural anthropologist, but she was willing to entertain that possibility nevertheless, and without her, I’d never have developed the “bio” part. Joyce’s mentorship has always been, and continues to be, a guiding light. Ron’s example of rigorous and locally engaged India fieldwork inspired me. I am also grateful to mentors whose influence has s­ haped my ­career beyond my doctoral committee: first, Dr. Andrew Rotman, who took me on my first trip to India in 2001 and instilled in me a lifelong fascination with South Asia. His incredible teaching and mentorship not only inspired me to study in India; they inspired me to become a professor. Second, I thank Dr. Lenore Manderson. Several years in, I still d­ on’t know how I managed to earn her allegiance, but I am unendingly grateful for it. This book simply would not have happened without her. I am also deeply grateful to Dr. K. M. Venkat Narayan of Emory University, with whom I published my first scholarly paper, and who advised on the early stages of this research. At the University of Alabama, Jim Bindon, Jason DeCaro, Bill Dressler, and Kathryn Oths have seen to it that I retain my sanity as an early-­career professor, and each has profoundly influenced my trajectory in their own way. In India, I owe an immea­sur­able debt to my in-­country advisor and collaborator, Dr. S. V. Madhu, who opened the doors that made this research pos­si­ble and contributed significantly to its design. I am also very grateful to Dr. Nikhil Tandon for his assistance in early phases of the research. The Research Society for the Study of Diabetes in India made this work pos­si­ble by welcoming me as a research affiliate, as did the following member-­physicians and their clinical staff, who opened their doors to me for a full year or other­wise assisted in the research: Drs. Chawla, Gomber, Gujral, Kalra, Kirti, Kumar, Lalwani, Lata, Madhu, Marya, Mithal, and Tripathi. Good research assistants can make or break a proj­ect, and I was incredibly fortunate to work with two extraordinary ­women during this research. Sibghat 163

164

Acknowledgments

Usmani was a wonderful research assistant in the early phases of the work and persisted with the proj­ect despite dealing with ­family tragedy in its midst. I am deeply grateful that she has remained a friend many years ­later. Sneha Sharma, my research assistant for the largest research phase, proved to be a quick study in qualitative methods, a devoted worker, and a lifelong friend. I could not have done this work without them both. I also thank Aftab Pasha for stepping in at crucial times, and for being a friend to me, my ­family, and my research. I owe a debt of gratitude to friends and colleagues who reviewed portions of the manuscript, sometimes multiple times. ­These include: William Dressler, Nicole Henderson, Suma Ikeuchi, Bonnie Kaiser, Christopher Lynn, Lenore Manderson, David Meek, Emily Mendenhall, Neely Myers, Kathryn Oths, Erik Peterson, Sonya Pritzker, Claire Snell-­Rood, Sarah and Chris Taylor, David Weaver, and four anonymous peer reviewers. Any shortcomings in the final product are mine alone. This research was expensive, and it would not have been pos­si­ble without the generous support of the Lemelson/SPA predoctoral fellowship, the American Institute of Indian Studies, the National Science Foundation, the Fulbright-­Hays Foundation, and the Emory University Department of Anthropology. When my d­ aughter was born in India, longtime friends and scholars of South Asia Emilia Bachrach, Beth Prosnitz, and Sarah Taylor descended on my apartment and fed and nurtured me through the miserable first two weeks of sleepless postpartum nights. I ­will never forget that kindness, nor the paneer turkeys shared at Thanksgiving with them and the inimitable Katy Hardy, my anthropology-­and India-­twin. David, my partner, has put up with the largest burden of this book. The research and writing spanned three continents, the birth of our two c­ hildren, and our transitions from gradu­ate students to professors. Hidden in its pages are the invisible ­labor he has done at each of t­ hese stages: letting my research come first, taking care of our c­ hildren while I wrote, commuting to his gradu­ate school so I could be closer to mine, reading and rereading drafts. I could not ask for a better partner in crime. Mom and Dad, Suzy and Paul, Jim and Rita, Quinn, Jon, Gita, Charrow, Sarah, Merinda, Anna: I love you all. Thank you for loving the odd person I am. Fi­nally, I owe an outsized debt to all the ­women who participated in my research. I continue to be humbled by how generously they gave of their time and how willingly they shared their experiences, all with ­little if any benefit to themselves. I can only hope to emulate that generosity in my own life.

NOTES

chapter 1  Opening a Win­d ow on Diabetes Experience 1. ​Child marriage was outlawed in 1978 with the Child Marriage Restraint Act, and even ear-

lier, ­under British rule, with the 1929 Child Marriage Prevention Act, but it is still relatively common in India. Maya’s marriage was motivated by her widowed ­mother’s poverty. Her older ­sister was already getting married, and ­doing both weddings together offered their ­mother a way to economize on the astronomical costs that a bride’s parents typically bear to host weddings in North India. 2. ​Type 1 diabetes, sometimes referred to as juvenile-­onset diabetes, is an autoimmune condition that results when the body attacks and destroys the cells in the pancreas that produce insulin. Briefly stated, the primary difference between the two types of diabetes is that in type 1, the body produces very l­ittle to no insulin, whereas in type 2, the body has usually become insulin resistant—­that is, the pancreas still produces insulin, but the body’s cells have lost their ability to properly use that insulin. Sometimes, even type 2 diabetes results in the pancreas losing its ability to produce enough insulin to keep up with the body’s demand. 3. ​ Withania somnifera, known in En­glish as Indian ginseng or poison gooseberry, is a plant in the nightshade f­ amily whose leaves and roots are used in Ayurveda to support and restore the immune system.

chapter 2  Seeking Modern India 1. ​The meat is goat or chicken, ­because Muslims, who are generally not vegetarian, are for-

bidden from eating beef by the majority Hindu population, which considers the cow a sacred animal. In twenty-­four of India’s twenty-­nine states, including the NCT region, ­there are ­legal restrictions against ­either selling or slaughtering cows. 2. ​See the appendix for details about how I assessed socioeconomic status and caste in the study. 3. ​This brief history of postcolonial India follows only the dominant currents in po­liti­cal and social thought, which means it leaves out the nonmajority. India is currently about 80 ­percent Hindu, but a full 15 ­percent of the population is Muslim, the largest religious minority in the country. Muslim ­women are virtually absent from this book, however. I did make consistent efforts to contact Muslim w ­ omen for home visits, but none w ­ ere willing to participate in the in-­depth interviews (although they are represented in the survey data). This likely stems partially from the fact that many Muslim w ­ omen practice purdah, or female seclusion, meaning they rarely go out and would be unlikely to receive non-­Muslim visitors, especially foreigners. My physical appearance and foreignness marked me as likely non-­Muslim, and my research assistant was a high-­caste Hindu ­woman. This means that my discussion of modernity and ­women in North India is r­ eally a discussion of Hindu w ­ omen’s modernity in North India, and I cannot speak to the unique experiences of diabetes, daily life, and f­ amily relationships that might differ for Muslim ­women. ­These differences could be significant, as Muslim ­women’s diets and activities tend to differ from Hindu ­women’s, as do their opportunities for exercise, clinic visits, trips to the market, and their ­family relationships.

165

166

Notes

chapter 3  Balance 1. ​I mea­sured “tension” using a standard depression and anxiety symptom screening tool, the

Hopkins Symptoms Checklist-25 (HSCL-25; Mollica et al. 2004). This par­tic­u­lar scale had not been Hindi-­translated before, so it was necessary to do some validation work to ensure that the questions w ­ ere actually assessing the information I wanted them to assess. A ­ fter translating the HSCL-25 into Hindi, I had it back-­translated into En­glish before using it, to ensure the accuracy of the translation. Then I used it with a new sample of thirty-­three ­women who came from the clinics where I eventually obtained the rest of the research participants, and I analyzed the resulting data for internal consistency and expected relationships with other variables (for details of t­ hese statistical tests and their results, see Weaver and Hadley 2011, Weaver and Kaiser 2014, and Weaver 2017). Th ­ ese tests gave me reasonable assurance that my Hindi version of the HSCL-25 was actually mea­sur­ing depression and anxiety symptoms. 2. ​ At press time, in early 2018, Prime Minister Narendra Modi had just announced “Modicare”—­a new program that would cover hospital treatment costs for one hundred million of the country’s poorest and most vulnerable families, so healthcare expenditure in India is changing rapidly. 3. ​C-­reactive protein is a protein synthesized by the liver whose levels rise in response to inflammatory pro­cesses in the body, such as immune-­system activity. ­Because it is per­sis­ tently elevated among p­ eople with chronic diseases, CRP is often used clinically to estimate risk of developing cardiovascular disease, hypertension, and diabetes. The American Heart Association advises that any CRP value above 1 mg/L indicates some level of cardiovascular risk, but I used it as an indicator of overall body stress and acuteness of diabetes. 4. ​In the study, I tested blood levels of Epstein-­Barr virus antibodies (EBV) to approximate the level of immune stress each w ­ oman was facing. Epstein-­Barr virus, a member of the herpes virus f­ amily, is one of the most common h­ uman viruses and is responsible for mononucleosis (known colloquially in the United States as “mono”). Once a person has been infected, the virus remains in the body permanently and may flare up during times of stress. For this reason, p­ eople who have more life stress have higher levels of EBV antibodies in their blood. EBV antibodies have been connected directly with social stressors such as socioeconomic in­equality and adverse life events, including in South Asian populations (McDade et al. 2000; Worthman and Panter-­Brick 2008). In this study, I used EBV antibodies as an index of w ­ omen’s experienced life stress. Th ­ ere are not standard cutoffs for EBV to indicate high or low stress in p­ eople’s lives, so instead, I compared individual w ­ omen’s scores to the overall spread of scores in the study sample to determine which ones w ­ ere highest and lowest. 5. ​Kalpana’s daily routine mirrored the model of age-­appropriate activities described in the Dharmashastras, Sanskrit texts composed during the Vedic period (ca. 1500–500 B.C.E.) that comprise part of the Hindu canon. Its key tenets are familiar to most Indians, even non-­ Hindus, such as Kalpana’s Sikh f­amily. In this “stages-­of-­life” (ashramas) model, ­people pass through four life phases, each with its own associated goals, responsibilities, and foci. In the last stage, sanyasa, elders should prepare for death by becoming more ascetic: withdrawing from worldly attachments by increasing devotional activities, eating simpler foods, wearing light-­ colored clothing, practicing celibacy, and turning decision-­making roles over to younger ­family members (Menon and Shweder 1998; Lamb 2000; Tilak 1989; Vatuk 1990, 1995). This is crucial for generating a good karmic balance and loosening one’s ties to earthly pursuits, thus preparing one for a favorable rebirth in the next life.

Notes 167

chapter 4  Tension 1. ​The use of passive voice h ­ ere (“Sugar happened to me” or “Sugar got hold of her,” instead of

“I got sugar”) is a common construct in Hindi and is used to talk about most illnesses and feelings like irritation, happiness, and tiredness. This is not gender specific, but rather is a feature of Hindi grammar. Moreover, one generally “takes” tension (tension lena) about a stressful event, rather than the En­glish construct of “having” tension about something. One may more generally “have a lot of tension happen” to them (tension hona, tension lagna).

chapter 5  Sacrifice 1. ​Recall that C-­reactive protein is used clinically to estimate risk of developing cardiovascu-

lar disease, hypertension, and diabetes, or to mea­sure the inflammatory load associated with having one of ­these diseases in an uncontrolled state. 2. ​Recall that I used Epstein-­Barr virus (EBV) antibodies as an index of ­women’s life stress. ­There are not standard cutoffs for EBV to indicate high or low stress in p­ eople’s lives, so instead, I compared individual ­women’s scores in the study sample to determine which ones ­were highest and lowest. H ­ ere, “approaching the highest quartile” means that Sita’s EBV antibody levels ­were higher than nearly three-­fourths of the other ­women in the study.

chapter 6  Resilience 1. ​ Sardar is a term of address often used for adult Sikh men, so ­here she is referring to her

Sikh neighbors.

chapter 7  Conclusion 1. ​The Heart Outcomes Prevention Evaluation (HOPE) Study was a large, randomized clini-

cal trial testing the effects of vari­ous drugs for preventing heart attacks and diabetes complications among ­people with heart disease. Based in Canada, it was funded by large national health organ­izations and major phar­ma­ceu­ti­cal corporations.

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INDEX

affirmative-­action legislation, 32 aging. See life stages model of aging allostatic load, 79, 132 American Diabetes Association, 12, 149 anger, 85, 86, 112 antidepressants, 79, 83–84, 93, 117 applied perspectives in medical anthropology, 149 arranged marriage, 36, 42, 57, 66, 135. See also marriage Ayurveda, 10, 14, 58, 82, 99, 123, 129–130, 150, 163n3 “bad blood,” 48 Basu, Amrita, 30 Bayer com­pany, 118 Bhagwat, Mohan Rao, 5, 6, 29. See also Delhi: as India’s “rape capital”; tradition versus modernity dichotomy Bharatiya Janata Party (BJP; “Indian ­People’s Party”), 29, 31. See also Bhagwat, Mohan Rao biomarkers in anthropological research: blood glucose, x, 10–11, 12, 52, 57, 79, 130, 132, 148; C-­reactive protein, 50, 75, 97, 112, 124, 136, 166n3, 167n1 (chap. 5); dried blood spots, 12; Epstein-­Barr virus antibodies, 12, 50, 97, 112, 124, 136, 166n4, 167n2 (chap. 5); glycated hemoglobin, 10–12, 43, 50, 58–59, 75, 80, 97, 112, 124, 125, 135, 136, 145; reasons for use, 11–12, 100, 112–113, 136 biomedicine: access, 9, 12, 14–15, 17, 49, 108, 148, 150–151; authority, 11, 48, 137, 142, 145; limits of, 56, 62, 80, 83, 124, 126, 128, 139, 144; morality of, 13, 19, 44–48, 54–56, 64–65, 147–148 (see also diabetes: discourse of “cheating” in diabetes care; resilience: critique of); syncretism with other traditions (see medical pluralism); treatment of diabetes, 44, 46–47, 63, 119 Blumhagen, Dan, 80 body mass index (BMI), 9, 11. See also obesity Bollywood, 68, 103 Bourdieu, Pierre, 104–106, 109

Calcutta, 66 “caste” and “class,” 3, 31–33, 36–38, 48, 122, 160. See also Hinduism; ­middle class Chatterjee, Partha, 34 Chua, Jocelyn, 65 colonialism, 23, 26–29, 32, 41, 68, 153, 165n3 (chap. 2). See also India: British colonial rule Corbin, Juliet, and Anselm Strauss, 53, 56, 61, 63, 64, 91 C-­reactive protein (CRP), 12, 50, 75, 97, 112, 124, 136, 166n3, 167n1 (chap. 5). See also u­ nder biomarkers in anthropological research critical approaches in medical anthropology, 7, 19, 42, 47, 56, 65, 146–147 Delhi: and Old Delhi, 26; comparative affluence vis-­à-­vis the rest of India, 6; emergence of gyms in, 7 as India’s “rape capital,” 5 (see also “Nirbhaya” case); and plan of the book, 18 dengue fever, 122, 123 depression and anxiety: compared to “tension,” 86–87 (see also idioms of distress); and diabetes, 20, 67, 78–79, 81, 88–91, 112, 133, 151; and ­family stress, 136; mea­sure­ment of, 20, 86–88, 159, 166n1; as sign of failure of self-­control, 85; stigma surrounding, 83–85, 93 (see also stigma) diabetes: biological predisposition of South Asian ­people to, 8; and costliness of diabetic diet, 118; and depression (see depression and anxiety); as discourse of “cheating” in diabetes care, 54, 62–63, 99, 130 (see also biomedicine: morality of); “disease of modernity,” 6 (see also modernity and diabetes); early screening programs for, 149–150; “fashionability” of, 8; “good” versus “bad” numbers, 10, 13; impossibility of locating single “cause,” 13; medical definition of, 3–4; neuropathy, 43, 46, 50, 100, 126; and “prediabetic” as diagnostic category, 1; quantitative mea­sures of, 10; self-­critique and self-­exculpation in ­women’s discussions of diabetes management, 99; stress during pregnancy of m ­ other as risk ­factor, 9

183

184

Index

diet, for diabetes, 44, 46–47, 99, 111, 114, 116–118, 122, 127, 155 disease: disease/illness distinction, 131, 146; social production of, 19 distress. See idioms of distress “dividual,” 80–81 domestic abuse, 2 “domestic modernity,” 38, 40, 102, 120, 138, 144 domestic workers, 35, 39, 41–43, 57, 110, 115–116, 133, 136 Donner, Henrike, 102 dowry, 36, 71–73, 77; ­legal abolition, 71 Ecks, Stefan, 13, 84, 145 endocrinologists and diabetologists, 9, 14, 79 Epstein-­Barr virus (EBV), 12, 50, 97, 112, 124, 136, 166n4, 167n2 (chap. 5). See also ­under biomarkers in anthropological research ethnography, 4, 11, 59, 91, 111, 145, 160–161 ethnophysiology, 68, 80. See also ­under tension Evans-­Pritchard, E. E., 67, 92 exercise and dietary changes as treatment for type 2 diabetes, 4, 7, 10, 46, 79, 111–112 ­family structure: and in-­laws, 1–2; and mother-​ in-­law/daughter-­in-­law relationships, 75–76; nuclear ­family, 27, 34–35; and the patrilocal ­family system, 2, 34. See also joint ­family fasting, religious, 3, 6, 21, 98, 115, 128, 130 fenugreek seeds. See Ayurveda Ferguson, James, 55 Ferzacca, Steve, 129 Feudtner, Chris, 13, 130 food and food preparation, 7, 24, 41, 58, 74, 81, 100, 114–118, 127–128. See also diet, for diabetes; self-­sacrifice Galvin, Rose, 52 Gandhi, Mahatma, 29 Garro, Linda, 80, 83 gender: changing norms, 6, 18, 23–25, 28, 36–37, 64–65, 70–71, 143 (see also urbanization); and doctor-­patient interactions, 48; and Indian nationalism, 29, 34, 38, 103, 105; self-­sacrifice, 92, 96–97, 119–120, 140, 146 (see also self-­sacrifice); specific strug­gles with diabetes, 107–110, 115, 144 ghabrahat (ner­vous­ness, anxiety), 16, 85–86, 98

Giddens, Anthony, 38 glucometers, 12, 47, 52, 57, 63, 130 glycated hemoglobin, 10–12, 43, 50, 58–59, 75, 80, 97, 112, 124, 125, 135, 136, 145. See also ­under biomarkers in anthropological research Gurgaon, 24, 26 headaches, 2, 4, 47, 85–86 “healthism,” 142, 148 Hinduism: caste system, 31–33, 41, 122 (see also “caste” and “class”); and food, 115; Hindu nationalism, 102; and notions of domestic morality, 118; and Punjabi Hindus, 33. See also fasting; Vedic texts “Hinglish,” 66, 68, 101 Hopkins Symptoms Checklist-25 for depression and anxiety, 20, 85, 88, 159, 166n1. See also depression and anxiety: mea­sure­ment of Huertin-­Roberts, Suzanne, 80 hyperglycemia and hypoglycemia, 4, 96, 99, 134 hypertension, 9, 50, 57, 80, 126, 127, 129, 155, 166n3, 167n1 (chap. 5) hypothalamic-­pituitary-­adrenal (HPA) axis, 132 idioms of distress, 20, 67–69, 83, 87, 92–94, 143, 145, 156. See also Nichter, Mark; tension India: birth rate, 34; British colonial rule, 23, 29 (see also colonialism); and conceptualizations of Indian personhood, 80 (see also “dividual”); as “diabetes capital,” 8; and emerging ­middle class, 31 (see also ­middle class); liberalization of economy in 1991, 7, 25, 45; low per-­capita healthcare spending, 45; Muslims in, 26, 29; vio­lence against ­women, 29 (see also Delhi: as India’s rape capital; “Nirbhaya” case); Westernization of, 6, 24 (see also Bhagwat, Mohan Rao; tradition versus modernity dichotomy); ­women’s ­labor force participation, 36, 37 infrastructure, 28 insulin: and suicide, 79; injections, 3, 4, 12, 44, 46, 57, 98, 101, 134; pumps, 46 International Diabetes Federation, 8, 142 interview techniques, 11, 20, 85–86, 101, 159. See also ethnography

Index 185 joint ­family: benefits of, 34–35, 57, 111; changing demographics, 34; mother-­in-­ law/daughter-­in-­law conflict, 21, 36, 66, 72–76, 127–128; “sandwich generation,” 30, 35, 40, 59–61, 104; stresses of, 1–3, 20, 35, 58, 75, 77, 84, 108–109, 112, 142, 144 (see also arranged marriage; marriage). See also ­family structure Joslin, Elliot, 44, 47, 49, 146; Diabetic Manual for the Mutual Use of Doctor and Patient (1919), 44, 55

neoliberalism, 45, 47, 52, 54–55, 65, 85, 138, 142 New Delhi. See Delhi Nichter, Mark, 67–68, 105. See also idioms of distress Nielsen Corporation, 91–92 “Nirbhaya” case, the, 5–6, 29. See also Delhi: as India’s rape capital NRI (non-­resident Indian), 33, 69

kamzori. See weakness Khare, Ravindra, 115, 117. See also food and food preparation Kleinman, Arthur, 93, 131, 146, 156, 160

“paglon ki daktron” (“crazy-­person doctors”). See psychiatry; stigma Parsons, Talcott: and “sick roles,” 55, 56, 61, 132 Partition of India and Pakistan, 29, 57 pativrata (“husband-­vows”), 103, 105–106, 110. See also Vedic texts positive thinking: and “optimism,” 124; and “resilience,” 121, 125–126 psychiatry, 83–84, 150–151; increasingly common in India, 150; relevance outside Western contexts, 93, 151. See also depression and anxiety

leprosy, 48 life chances, 19, 42, 49, 65, 76 life stages model of aging, 59, 106, 166n5; and retirement from h­ ouse­hold management, 39, 59, 76; and working into old age, 39, 73–76, 110 Maintenance and Welfare of Parents and Se­nior Citizens Act (2007), 59 malingering, 2 Manderson, Lenore, 47 marriage: as route to social mobility, 32, 71–72, 84, 92; child marriage, 165n1; interreligious marriage, 36; love marriage versus arranged marriage, 36. See also arranged marriage; dowry McDonald’s, 7, 18 medical clinics as research sites, 1, 11, 14–15, 17–18, 34, 116, 159 medical pluralism, 9, 10, 14, 78, 82, 83, 130, 150, 151, 161. See also Ayurveda Mendenhall, Emily, 78, 81, 90, 145 Menon, Usha, and Richard A. Shweder, 111 microloans, 153 ­middle class, 28, 31–33, 73, 75, 89, 110, 155. See also “caste” and “class” modernity, 18–19, 25, 28, 31, 37–40, 42, 65; and diabetes, 6, 48, 64, 148; 76, 87, 92; embodied through diabetes, 8, 114, 144–145, 148 (see also Solomon, Harris); and tension, 69-70, 76, 87, 92. See also tradition versus ­modernity dichotomy “Modicare,” 166n2

obesity, 6, 45, 50, 114, 126, 145

Radhakrishnan, Smitha, 102, 105 Rao, Narasimha, 25 Rashtriya Swayamsevak Sangh (RSS, “National Volunteer Union”), 5, 29 Research Society for the Study of Diabetes in India (RSSDI), 14 resilience, 124–125, 134–135, 137, 146; alternative forms, 124, 126–133; critique of, 126, 138–140; and “self-­efficacy,” 137 “sandwich generation.” See ­under joint ­ family satsang (Hindu religious ceremony), 98. See also Hinduism sedentary lifestyles. See urbanization self-­care, 5, 21, 40–42, 64, 101–102, 118, 141; and “responsibilized” self-­care, 53, 74, 76, 101, 102, 104–106; and work outside the home, 110; versus “other-­care,” 145. See also self-­sacrifice self-­mastery. See resilience self-­sacrifice: avoidance of medical care as per­for­mance of, 114, 119, 145–146; as a

186

Index

self-­sacrifice (continued) distinctly Indian gendered value, 29, 39, 92, 96–97, 100–101, 103–110; embodied, 100, 106, 113–114; and “habitus” of, 37, 102–105, 113, 119, 138–141, 153 (see also Bourdieu, Pierre; gender); in Jewish-­ American culture, 104; and sati, 103. See also ­under gender Seligman, Rebecca, 45 Shetty, Shilpa, 103–104 “sick roles.” See Parsons, Talcott Singh, Manmohan, 25 sleep apnea, 50 Slut Walk, 5, 18 Snell-­Rood, Claire, 87, 105, 144–146 social capital. See Bourdieu, Pierre Solomon, Harris, 8, 117, 145, 148 stigma: and diabetes, 45; and ­mental health, 14, 83–85, 93. See also depression and anxiety: stigma surrounding structure-­versus-­agency debate, 64–65 subaltern classes, 27, 31, 34 “sugar” as an expression for diabetes, xi, 3, 57, 66 suicide, 52, 77, 79, 103, 120, 136 Talukdar, Jaita, 28 tension: as an alternative to stigma of “depression,” 69, 83–85, 87, 93; as compared to the Anglo-­American concept “stress,” 67–68; and ethnophysiology, 78–81; as an “idiom of distress,” 68, 87, 92–93, 94; as

“key word,” 67, 92, 143, 156; mea­sur­ing amount of in ­women’s lives, 20, 85–87, 159, 166n3; as a modern phenomenon, 70, 71, 76, 144–145; multiple meaning of, 20, 21, 76–78, 92; tension-­diabetes relationship, 2, 11, 20, 21, 40, 72–73, 78–82, 92, 122, 136; versus Hindi word “tanav,” 68; ­women’s own understanding of, 70 tradition versus modernity dichotomy, 5, 25, 36, 119, 143–144; critique of, 27, 28. See also subaltern classes urbanization: anonymity, 32, 70; changing gender norms, 28, 70–71; and health, 7–8, 10, 20 (see also diabetes: as a “disease of modernity”; tension: as a modern phenomenon). See also gender: changing norms Uttar Pradesh, 117 Vedic texts, 6, 29, 103, 115, 119, 166n5 victim-­blaming, 5, 48, 145–147, 154 weakness, 3, 4, 60, 85–86, 95 widowhood, 1, 3, 50, 57. See also life stages model of aging ­Women of Tomorrow report (2011). See Nielsen Corporation World Health Organ­ization, 9, 142 Yamuna River, 26

ABOUT THE AUTHOR

lesley Jo Weaver, PhD, MPH (Emory University), is an assistant professor of medical anthropology in the department of international studies at the University of Oregon.