Affliction: Health, Disease, Poverty

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Library of Congress Cataloging-in-Publication Data

Das, Veena, author.

Affliction : health, disease, poverty / Veena Das. — First edition.

p. ; cm. — (Forms of living)

Includes bibliographical references and index.

Summary: Affliction: Health, Disease, Poverty inaugurates a novel way of understanding the trajectories of health and disease in the context of poverty. It traces the unfolding of illness within families, local communities, neighborhood markets and in occult worlds. Privileging the experience of people living in these neighborhoods it asks how can global health be made to take this experience into account rather than escape from it? — Provided by publisher.

ISBN 978-0-8232-6180-2 (cloth) — ISBN 978-0-8232-6181-9 (paper)

I. Title. II. Series: Forms of living.

[DNLM: 1. Delivery of Health Care—India. 2. Health Knowledge, Attitudes, Practice—India. 3. Culture—India. 4. Family—India. 5. Poverty—India. 6. Stress, Psychological—India. W 84 JI4]

RA418.5.P6

362.1086’942—dc23

2014030233

Printed in the United States of America

17 16 15 5 4 3 2 1

First edition

For

Arthur Kleinman and Talal Asad

With whom my agreement runs much deeper

than agreement in opinions.

Thank you for your friendship.

CONTENTS

Acknowledgments

Affliction: An Introduction

1. How the Body Speaks

2. A Child Learns Illness and Learns Death

3. Mental Illness, Psychiatric Institutions, and the Singularity of Lives

4. Dangerous Liaisons: Technology, Kinship, and Wild Spirits

5. The Reluctant Healer and the Darkness of Our Times

6. Medicines, Markets, and Healing

7. Global Health Discourse and the View from Planet Earth

Conclusion: Thoughts for the Day after Tomorrow

References

Index

ACKNOWLEDGMENTS

This book was written over many years in small bits and pieces that came together for me only recently. My main concern has been to understand what is going on in the low-income neighborhoods in Delhi where I have worked in different capacities for several years. I thank the following for their generosity in sharing their lives and their thoughts and for letting me benefit from their ungrudging criticisms and support.

To the people in the seven urban neighborhoods described here and to those in the three others that were added later—you have given me reason to believe in anthropology and in my capacity for friendship.

To the ISERDD members—Charu Nanda, Purshottam, Geeta, Rajan Singh, and Simi Chaturvedi—your work and dedication sustains our common endeavor, and your fierce commitment to the possibility of doing something for those whom you meet in the course of your work is life-giving. To Devinder, Bablu, Varun, Anand, and Roopa—and also to Pushpa and Zargham—thank you for cheerfully accomplishing the various tasks that made the work at ISERDD a pleasure.

To my colleagues at Johns Hopkins University and to our graduate students—I thank you for sustaining a serious intellectual life despite all the travails of the past few years.

To Clara Han, Naveeda Khan, and Aaron Goodfellow—thank you for the care with which you have read some of these chapters and for your astute comments.

To Ranendra Das, Jishnu Das, and Jeffrey Hammer—thank you for your openness to anthropology, which has permitted me, in turn, to be open to certain forms of economic reasoning.

To Saumya Das and Christiana Iyasere—thanks for clarifying my queries on medical matters and being ever ready to engage even when we have vigorous disagreements.

To Sanmay Das—I am ever grateful for the gentle way in which you raise questions—they are never bouncers but rather like googlies that are oh-so-beautiful.

To Manoj Mohanan, Brian Chan, Diana Tabak, Nomita Divi, and Grant Miller—my gratitude for your active participation and enthusiasm for training the next generation from different walks of life.

To Yasmeen Arif, Aditya Bharadwaj, Rita Brara, Pratiksha Baxi, Janet Carsten, Roma Chatterji, Christopher Davis, Didier Fassin, Paola Maratti, Deepak Mehta, Michael Moon, Sylvain Perdigon, Shalini Randeria, Bhrigupati Singh, and, Jonathan Spencer—thank you for your engagement with my work. The discussions with each of you over the themes explored here took place in various settings—in a kitchen, a café, a classroom, during a walk, in a seminar room, on the phone—but each discussion left an indelible mark.

To the four anonymous reviewers for the Press—I thank you for the care with which you read the manuscript and your criticisms, which were crucial to my revisions of the text. I hope you recognize your imprint on the final text.

To the Institute of Advanced Study, Paris, thank you for a fellowship in 2009 and the opportunity to present my work in several thought-provoking sessions, and to Claude Imbert and Carlo Severi for helping me fine-tune the philosophical implications of my arguments.

To Anne Lovell, Stefania Pandolfo, Sandra Laugier, Pierre-Henri Castel, and Richard Rechtman—your generosity in sustaining discussions on the theme of madness has been crucial for me to think of the ordinary in new ways.

To the participants in the Critical Global Health Seminar—thank you for the opportunity to look at themes in global health from a fresh perspective.

To the graduate students in my proseminar class in 2013—Ghazal Asif, Swayam Bagaria, Önder Çelik, and Mac Skelton—thank you for the semester-long discussion that is reflected in several chapters of the book.

To Andrew Brandel—thank for your intellectual enthusiasm as well as for your help with the logistics of bringing the book to completion.

To the members of the Governing Board of ISERDD—Ranendra Das, Roma Chatterji, Kuriakose Mamkoottam, Amitabh Mukhopadyay, Deepak Mehta—thank you for your vigilance and your support.

To the staff of Fordham University Press and especially Thomas Lay, Eric Newman, and Teresa Jesionowski—I thank you for your careful editing and attention to detail. It is a treat to work with you.

To the late Helen Tartar—your words echo and echo in more ways than I can say. I miss your delicacy of touch.

To the late Harry Marks, whose presence at Johns Hopkins was like the pure gift—I thank you for the most memorable discussions on whichever subject our fancy took us to.

To Audrey Cantlie, who sadly passed away in the ninety-first year of her life when she was in the middle of writing a book on Wilfred Bion and Jacques Lacan—your intellectual spirit and your love for learning have sustained me since we first met in 1978. I was blessed to have your friendship.

To Nayan, Lucas, Uma, Ayla, Lalita, Kiran, and Uma Jaan—thank you for just being there.

Finally to Stanley Cavell—your words live in my work in whatever way I can receive them—they give it life.

The author wishes to acknowledge the following publishers for generously granting permission to reproduce revised versions of chapters originally published in their respective journals and books and to co-authors for agreeing to let me publish the papers jointly written under my name.

How the Body Speaks (chapter 1) is a revised version of the chapter written jointly with Ranendra K. Das titled How the Body Speaks: Illness and Lifeworld among the Urban Poor. In Subjectivity: Ethnographic Investigations, edited by João Biehl, Byron Good, and Arthur Kleinman, 66–97. Berkeley: University of California Press, 2007.

Mental Illness, Psychiatric Institutions, and the Singularity of Life (chapter 3) is a revised version of Mental illness and the Urban Poor: Psychiatric Institutions and the Singularity of Life (written with the assistance of Rajan Bhandari and Simi Bajaj), published in Enchantments of Modernity: Empire, Nation, Globalization, edited by Saurabh Dube, 402–28. New Delhi: Rout-ledge, 2009.

Dangerous Liaisons: Technology, Kinship, and Wild Spirits (chapter 4) is a revised version of The Life of Humans and the Life of Roaming Spirits, published in Rethinking the Human, edited by J. Michelle Molina and Donald. K. Swearer, 31–50. Cambridge, Mass.: Center for the Study of World Religions, Harvard Divinity School, 2010.

The Reluctant Healer and the Darkness of Our Times (chapter 5) was previously published as The Dreamed Guru: The Entangled Lives of the Amil and the Anthropologist, in The Guru in South Asia, edited by Jacob Copeman and Aya Ikegama, 133–55. Abingdon, UK: Routledge, 2012.

Veena Das

Delhi, 2013

Affliction: An Introduction

To arrive at a mode of writing that would allow a world to be disclosed, a world in which life pulsates with the beats of suffering and also with the small pleasures of everyday life, is a daunting challenge. Such suffering as I seek to describe in this book is often absorbed in the everyday and yet scars it with a sense of things being not quite right, even a sense of suffocation and foreboding. Over the years, I have learned how to be attentive to the manner in which ordinary moments might contain within them memories of great violence or suffering. However, suffering that is assimilated within the normal and yet not fully absorbed in it is much more difficult to decipher.

I have titled this book Affliction. The title did not come to me as a result of deliberate thought—rather, it became a kind of haunting word, as I was absorbed in my field notes while composing the different chapters of this book. I know that it is hard to hear this word without the sensory experience that Simone Weil’s examples draw from us of a suffering that goes beyond physical pain and beyond even ordinary suffering (Weil 1951). Yet Weil is a Christian mystic, and the longing for God as well as the story of the suffering of Christ are integral to the texture of her thought. My attempt is to see if I can use this term while making it mean otherwise. Said differently, I want this term to lend itself to an environment and to sensibilities that might sometimes call on God but are not necessarily looking for a Christ-like figure to lift them out of the abyss that is made up of a kind of corrosion of everyday life that seems to take away from many the capacity to engage life. Not everyone succumbs to this suffering in the same way, even if their souls are marked by what they have had to endure. Many people within the same environment move from one threshold of life marked by bleakness, even abjection, to some other threshold at which they seem to engage with others, laugh, eat, have sex, look after children, greet visitors. I am interested in these subtle movements between these different thresholds of life (see Esposito 2008; Singh 2012). My sense is that although much literature in psychology or behavioral economics tries to ask what makes for the resilience of some people as opposed to others—the more interesting question is, How do the movements between these different thresholds of life carry the marks of suffering endured, of betrayals, as well as small acts of kindness that have made it possible for some to survive while others die? And how has an everyday ethics been honed out of these experiences? Perhaps the idea of malheur captures the kind of despair and misery that I encountered, but it still falls short of the way in which people can muster the energy to make life habitable for those they feel intimate with or responsible for.

At first glance it might appear that the difference between affliction and malheur corresponds to the difference between a subjective experience of suffering and the objective conditions that account for the unequal distribution of suffering, or the difference between a theological move in which suffering poses questions of theodicy and an analysis that privileges the economic and political conditions rooted in political economy. My stake in this book, however, is to overcome these distinctions, for I do not wish to bracket either questions relating to institutions and objective conditions or those that relate to experience and the processes of subjectivization. I contend, however, that none of these terms may be treated as a given in anthropological analysis. Experience is not a transparent category, for its essential feature of opacity makes the work of tracking it much more difficult than many authors assume; nor are the character and functioning of institutions such as the state, the market, the neighborhood, and the family apparent right at the beginning; one cannot simply point to them as one points to a chair or a table. These objects emerge through the process of description.

Weil (1951) presents the image of affliction as a parasite that has established itself within the body. She speaks of how when an apprentice gets hurt or complains of being tired, the workers and peasants express the condition as that of the trade entering his body. Though Weil repeatedly insists that these forms of secular affliction are the same as the feeling that God has absented himself from the world, the most moving descriptions of her own state of affliction are best expressed in Christian terms. Affliction constrained Christ to implore that he might be spared, to seek consolation from man, to believe he was forsaken by the Father. It forced a just man to cry out against God, a just man as perfect as human nature can be, more so, perhaps, if Job is less a historical character than a figure of Christ (Weil 1951, 72). She is right that affliction bears a close relation to physical pain, which she sees as an irreducible part of affliction, although the latter cannot be reduced to physical pain. And although one could find a comparison between the affliction expressed in the cry of Christ asking why God, his Father, has abandoned him with emblematic scenes in Sanskrit literature (some of which Weil alludes to), my focus is not on the dramatic potential of the great moments in which heroic figures are caught in the grip of a decision but on the ordinariness of the suffering of many people I came to know that calls out for description and analysis. Didier Fassin and his colleagues, in a book called Afflictions (2004), give compelling accounts of life lived with the AIDS epidemic in South Africa, as they describe how words were spoken and heard by women who were trying to gather food, find lodging, or working to extend the life of a child. A famous line in an Urdu poem that would sometimes come unbidden to me during my fieldwork was "ek bakhiya udheda, ek siya, yun umr basar kab hoti hai"—unraveling one stitch and putting in place another,¹ how can life be lived in this manner? Yet this is exactly how life was lived.

Can the terms affliction and malheur together or in a hyphenated relation carry the weight of lives in which even those who had been able to overcome a severe illness or had cared for a sick or dying relative were left with a feeling that such experiences had darkened their world, or that the world had lost some of its benign quality? In the end this is not a book that takes sides on the question as to whether anthropology is slipping into a suffering slot, as some claim, and whether it should instead turn to the search for the good in human life (Robbins 2013) for the simple reason that I do not understand how these two modes of doing anthropology are put into opposition in the first place. Though I return to some of these issues in the Conclusion, the greatest challenge to me is to find a way to make my prose commensurate with the sense of endurance I found among the people struggling to secure everyday life. If I myself get caught in a swirl of emotions created by the tight embrace of forms of living and forms of dying, I have nevertheless tried hard to protect the reader from being overcome with these emotions.

Ackbar Abbas (n.d) and his colleagues have provided us with a manifesto of how to think of those objects that do not lend themselves to existing theoretical templates. They call this poor theory to capture its provisional character. Among other characterizations of poor theory, the manifesto says: Poor theory suggests not a resignation to epistemological futility but an openness to that which outpaces understanding. Objects of analysis present, in their contingency, in their being unsystematic, a degree of intransigence that frustrates mastery. The intractability of the object throws into relief the possibility of error in our methods. I propose that a good place to start is with an open acknowledgment of the difficulty of theorizing the kind of suffering that is ordinary, not dramatic enough to compel attention. We need to problematize the taken-for-granted definitions of the poor that identify them as recipients of charity or welfare, whose life projects are crafted primarily around issues of survival. Instead, I propose to pay close attention to their ethical projects, which include the failures that haunt their relationships.

Different Shades of Suffering and the Burden of Anthropological Description

For almost fourteen years now, since 1999, I have been working with ISERDD (Institute for Socio-Economic Research in Development and Democracy), a small research organization that some of my colleagues from the University of Delhi founded to document and analyze the transformations taking place in the lives of the urban poor in that city. I describe the circumstances under which this organization was born in a recent paper (V. Das 2014b), and the following description is taken from that account.

In 1984, in the face of the devastating violence against the Sikhs in the wake of Mrs. Gandhi’s assassination, I was able to find the resources within my community of friends and colleagues in Delhi to insert my own efforts within the collective efforts to contest official renderings of events. We were able to act in those fraught circumstances by lending what expertise we had to the task of documenting the deaths and losses in the violence against the Sikhs, especially in the peripheral areas of Delhi. One part of this reporting was to adopt protocols of data collection and reporting that could stand up to bureaucratic scrutiny in order to assess claims and get some kind of official acknowledgment of the harm done to survivors.

In the case of the terrible industrial disaster of Bhopal too I was able to find some way of being helpful because a community of lawyers, NGOs, and other activists were there to provide the framework within which legal action could take place. But this is when I also learned that justice was not a matter of everything or nothing (see Das and Kleinman 2001). My book Critical Events (1995) was born out of this milieu of conversations.

I do not remember the sequence of events, but conversations at home and among my close colleagues at the Delhi School of Economics led me to think more closely about further questions that arose from my prolonged involvement with the Sikh survivors of Sultanpuri, one of the peripheral areas of Delhi where I worked. I remember the small events then—a woman stopping me on the road one day and pointing to a spot where she said that her husband had been killed, not in the riots but in the course of a neighborhood quarrel that escalated and that no one came to help for fear of annoying the local big men. We were torn by the question of what responsibility devolves on us in such circumstances.² Just the simple fact of spending so much time in the slums in 1984 and 1985 made me realize that we could not draw boundaries between the everyday forms of deprivation that I was seeing in urban slums and the events of escalating violence that we were engaged in documenting. I also realized that anthropological evidence of the kind that could be used for serious advocacy on such issues as sanitation, health care, or everyday forms of violence was simply not available. Even in the legal case against Union Carbide in the Bhopal disaster, we (a loose configuration of activists) were stumped by the fact that we could not show what the morbidity patterns were among the poor under normal circumstances—so our claim that the increased morbidity among the poor as a result of exposure to methyl isocyanate was not easy to demonstrate in court.

This set of disappointments led to another kind of curiosity—what would it take to systematically document the transformations in health conditions of the urban poor? It was in order to find a systematic way of doing research in such settings that some of us researchers in Delhi founded the Institute of Socioeconomic Research on Development and Democracy (ISERDD). Our aims were modest and evolved through trial and error. We planned to recruit staff for the institute from low-income localites. These would be first-generation college students, and and our plan was to train them to investigate their environment. In time ISERDD developed many projects of an interdisciplinary character with researchers from various institutions, using mixed methods of surveys and ethno-graphic interviews.³

I should add that ISERDD also offers medical and educational assistance to poor families in Delhi and sometimes runs workshops and focus-group discussions to address issues of interest to people living in slums and low-income neighborhoods. In the process of participating in the activities of ISERDD over the years and conducting my own research with the assistance of ISERDD members, I have absorbed so many nuances of everyday life at ISERDD that although I try to indicate clearly the kind of information that I gathered through my own observations, that which was the result of collective efforts with ISERDD, and what became available through participation in focus-group discussions and activities generated by ISERDD’s community projects in the chapters ahead, I realize that some kinds of knowing simply happened through our collective efforts in which it was not easy to mark out the boundaries of each other’s thoughts. One simply could not draw a line between something marked research and something marked life.

Let me pause now and give a flavor of the way in which you might come upon suffering within a scene of the ordinary in any of the seven neighborhoods from which the accounts that follow emerge. Because of financial and other constraints, we at ISERDD started by working on seven neighborhoods at different levels of income in Delhi in 1999 and then gradually expanded to include two more low-income neighborhoods to get a better representation of Muslim neighborhoods. Subsequently, two of the high-income neighborhoods were dropped after the completion of the health surveys. ISERDD staff maintained contacts with sample households in all other neighborhoods and also participated in various events of a public nature, such as political meetings, festivals, marriages, and sporting events. The last phase of expansion was in 2011 when ISERDD launched another study on citizenship for which one neighborhood from the earlier studies and three new neighborhoods were added. I have had very little contact with the high-income neighborhoods, but others have written on the data that ISERDD collected. Although a lot of work that we did was collaborative, the essays here are from the earlier phases when ISERDD members were still learning the craft of research, such as conducting surveys, doing interviews, and mapping basic facilities. As the different studies progressed, the role of ISERDD members changed. They played a crucial role in projects directed by other researchers in partnership with ISERDD (Jishnu Das, Jeffrey Hammer, Manoj Mohanan, Michael Walton, Grant Miller, Roma Chatterji, and Deepak Mehta). A project that held special importance for me was the training of ordinary people who had little education and hardly any work experience who were recruited from the slums to act as standardized patients in a study to assess the quality of care of practitioners in rural and urban areas. Rather than give a schematic account of these processes, I aim to allow the role of ISERDD members and the research methods used to emerge in the following chapters in the process of the substantive descriptions of health, disease, and poverty.

Walking and Greeting

One day as I was strolling through the streets of Kathputli colony in West Delhi—a locality made up of street performers who had settled there through the initiative of an NGO founded by Rajiv Sethi, the famous designer and advocate of street arts—I stopped to talk to a local leader. If you read accounts of this locality on websites and in interviews with Sethi, you get the sense of a magical world in which people live in houses designed as tents in a neighborhood that replicates an imagined life when street arts were nourished by rich patrons and loved by the populace.⁴ If, however, you spend time in these streets every day, as ISERDD members and I did, you see the dirt and the squalor—the drains that do not work, the pools of water gathered in the streets that enter the houses, the inebriated men—and you hear the accounts of sickness and death; you meet the women who are indeed great artists and who often narrate accounts of performances in faraway countries—Germany, Sweden, America—but who struggle here in the streets of Kathputli colony with rarely having enough food, with frequent sickness, with tuberculosis, with children going astray. Their narratives bring forth the intermittent presence of storied figures such as Sethi and Madam Stella and their famed rivalry. These great personages are like spectral figures or like the playful gods of Hindu mythology who can give huge bounties but who then disappear for long periods, unable to hear anything about the perils that stalk the everyday life of their devotees. The money some artists earn sporadically during their small trips abroad to represent Indian living arts disappears quickly in commissions and debts they have incurred—the local favorites of these distant gods seem to live in slightly better houses but do not fare much better in terms of health or education.

Scene One

We stood in a street corner of this famed locality, talking to a local leader. A young man came and stood next to us, looking us over with curiosity. Pointing to him, the local leader said, This is my son, my son from the second. There are three other children. So you have four children? Yes, four children from the second. So this is your second wife? Yes, the first one died. She had two children. So you have six children? No, the woman died, and her children died too.

I was struck by the pronouns—her children—not my or our children.

Scene Two

We are now in Punjabi Basti, a slightly more affluent colony in the middle of efforts to become what is known in official parlance as regularized, which would give residents certain entitlements to water, sanitation, and electricity and provide security of tenure (for a detailed description of some of these processes see V. Das 2014a and V. Das and Walton forthcoming).

ISERDD members were recruiting households for a survey in 2011 on citizenship directed by Michael Walton and me. They were explaining consent procedures and filling out demographic forms. This is what one of them recorded in a field diary that all surveyors were expected to maintain. The original entries were in Hindi, which I translate here.

Urmila Ji is a forty-year-old woman who readily agreed to participate in the survey. We began to fill the basic demographic form. When we came to the column on number of children, Urmila Ji suddenly began to cry. What should I tell you? Earlier I had four children but now I have only three. I asked, Should I come back another time, but she insisted I stay—Bhaiya (brother), how often does anyone come to my door to listen to my story? Then she told me how her son who was four years old died last year.

"He was playing on the terrace with some children of the neighborhood. The terraces don’t have railings or bordering walls [chajja] here. His attention must have wavered [dhyan chuk gaya hoga]. Suddenly I saw my neighbors carrying him and shouting that he had fallen from the terrace. He was alive and conscious then. My husband was not home, but my neighbors helped me to take him to the nearby government hospital. They admitted him to the ICU and did a brain x-ray. They could not find anything. But he began to vomit that night, and his face was swelling. We begged the doctor, please do something. The doctor asked for another x-ray. We could see the boy was sinking, but he just said we have to wait and watch. Then a technician told us that in cases of head injury you needed a CT scan, not an x-ray. The doctor was so rude when we asked that instead of x-ray, a CT scan should be done—are you the doctor or am I the doctor, he said. So we insisted that the child be immediately discharged from the hospital, and we rushed him to a private hospital where a CT scan was done, and they said, he should have been immediately operated upon as there was bleeding in the brain—but now it was too late. Due to that doctor I had to wash my hands of my child [bacche se haath dhona pada] [a metaphoric expression for the loss of the child—author’s explanation]."

In a recent paper (J. Das, R. K. Das, and V. Das 2012) we describe the surprising finding that while women who had suffered cumulative adverse reproductive events in their lives (miscarriages, abortions, stillbirth, child death) showed very high levels of depression, their spouses did not. We suggested that men do not register these events through the language of emotion, and that is why mental health questionnaires based on itemized symptom lists do not capture how they feel. In the first scene we heard a man saying that the children who had died were her children referring to his dead wife. In other cases we found that men use mythological analogies comparing themselves to warriors who have laid down their weapons or make textual references far more than women do (cf. Desjarlais 2003). The death of a child can surface in a woman’s account in the most quotidian manner, and grief can pour out along with accusations and blame for the death. This woman came from Punjabi Basti, a neighboring locality to Kathputli colony where households are a little more affluent, and people enjoy better education and higher incomes. But this factor did not seem to make any difference in how physicians treated them in public hospitals.

Scene Three

We move to another locality in West Patel Nagar, in a neighborhood very similar to Punjabi Basti. I was visiting a family in which a widowed woman, Savita, lived with her adult son and her husband’s elder brother, Prakash. I greeted the old man, who was wearing a frayed kurta (tunic) and pajamas with no pullover or warm wrapping. He was shivering in the cold. Reading my worried expression as I looked at him, Savita said, "There is no point in talking to him, Sister. He will not wear any hand-me-downs—see, my son even got a new sweater for him, but he says that he can smell a Muslim in it [isme musalle ki bu aati hai]."

In our conversation it emerged that Prakash had been admitted to a psychiatric institution as an in-patient about forty years ago because